Barbara Connolly, PhD, runs one of the most trusted benzodiazepine communities online. She is the senior admin of the Benzo Warrior Community, a group of more than 5,000 people who are learning how to come off these drugs without being harmed in the process.
She is not a physician. Her doctorate is in political science. What she brings is lived experience, years of running the community, and a coach’s eye for what actually helps a person get off a benzodiazepine.
Dr. Leeds has sent patients to her group for years. On this episode of The Rehab Podcast, the two of them worked through the real mechanics of a safe taper.
Where did the Benzo Warrior Community come from?
The community was founded about six or seven years ago by the late Michelle Goulevitch, also known as Michelle Laurice.
She had survived one of the catastrophic events that bring people to these groups in the first place: a cold-turkey reaction that put her in a wheelchair while doctors around her could not explain what had happened. She figured much of it out on her own.
Then she looked at the other benzo groups and decided she could do better. She wanted a calmer place, built on good information, without the fear that runs through so many withdrawal communities.
Barbara took over four years ago, after Michelle passed. She was drawn to the same thing Michelle was: better information about how to taper and how to manage symptoms, in a steadier atmosphere.
The mission has several parts at once. It is support. It is education. There is a thread of activism in it, too, as members come to understand what happened to them and why. And it reaches beyond benzodiazepines to people coming off other psychotropic medications.
What are a person’s real options for getting off a benzodiazepine?
Barbara describes three paths, and the community meets people wherever they are on them.
The first is a doctor who is willing to learn. For that patient, the group assembles a packet: the Maudsley Deprescribing Guidelines, the ASAM deprescribing guidelines, or the patient tools from the Alliance for Benzodiazepine Best Practices, handed to the physician with a plain request to taper this way. The honest problem, Barbara says, is that not every doctor will read them.
The second is the person who has to do it largely on their own. Here she still reaches for the Ashton Manual, because it is written in clean, simple language that anyone can pick up, even if it is not fully current. The Benzodiazepine Information Coalition’s tapering material fills in the practical logistics.
The third is a coach, who can sit between the patient and the prescriber. Barbara often plays that role herself, feeding a doctor a consideration here and a piece of information there without ever making the medical decision.
The point is not that every doctor is the enemy. The point is that a safe taper should be within reach of everyone, whether or not the person holding the prescription pad knows how to run one. When it isn’t, an experienced deprescribing benzodiazepine doctor can be worth the search.
How do people taper on their own with scales, water, and milk?
The methods sound daunting and turn out to be simple. That is why they get used over and over.
Some people weigh their pills on a jeweler’s scale. A tablet does not weigh its labeled dose; it is mostly filler. But for most of a taper you don’t need the exact milligrams. If you are reducing by a small percentage off your current dose, you can take that percentage off the weight and stay accurate enough.
Others make a liquid at home. A water taper works for many people. Fat-soluble tablets dissolve better in whole milk, because the fat is the point, and a milk mixture has to be made fresh. Diazepam even comes as a manufacturer’s liquid; that is how Barbara came off her own last piece of Valium.
Compounding is the cleanest option, and the one most often out of reach. Some doctors won’t prescribe it. Some insurers won’t cover it. Barbara had someone quoted a thousand dollars for a compounded benzodiazepine in California. Dr. Leeds notes that compounding prices vary wildly from one pharmacy to the next, sometimes by half.
Why does a taper have to follow a hyperbolic curve?
This is the idea the community hammers hardest, and for good reason.
You cannot come down in a straight line. Cutting the same amount every week works until it doesn’t, and then a person hits a wall. Most people discover this the hard way, reduce too fast, get in trouble, and land back in the group in a panic.
The reason is the shape of the curve. Near the top it is steep, and people can often move faster than they expect. Near the bottom each cut represents a larger and larger share of what is left. So the group’s rule is deliberately simple: reduce by no more than five to ten percent off your current dose, not off the dose you started at.
Mark Horowitz laid this out in a talk on the Benzo Warrior Community YouTube channel, before the Maudsley guidelines were even published. The full reasoning about dose-response curves is more than a frightened newcomer can absorb, so the community distills it to that one line.
The curve never actually reaches zero. Followed literally, a taper would never end. At some point a person makes a small final jump and is done, which is where Barbara still leans on Heather Ashton’s philosophy. Some people taper lower than they strictly need to, out of fear. If that is what lets them stop, she does not talk them out of it.
What is the right way to read the Ashton Manual?
Read the words, not the charts.
The charts are illustrative. The instruction that matters is on the first page: the taper should be patient-directed, done only as fast as the patient can tolerate. People skip the words, fixate on the schedule, and then treat a rough guide as a deadline.
Dr. Leeds has watched that happen from the outside. A pharmacist once calculated the weeks against the manual’s chart and told his patient she “should be at stage 12” and was only at stage 9, and demanded to know why the taper wasn’t moving faster. The manual’s own words answer her: as slowly as the patient can tolerate. The chart was never the rule.
Are these medications toxic, or is it the withdrawal that injures people?
Both, and telling them apart is the hard part.
Barbara’s own case shows the first half. She was put on Klonopin in her early thirties for muscle spasms and kept on it for twenty-two years. Toward the end she could not commit her new address to memory, and she was losing the ability to drive. She assumed she was simply getting older. It was not until she came off that the memory and the driving came back, and she knew for certain what had been doing it.
She is not unusual. People on the high-potency benzodiazepines — Xanax, Klonopin, Ativan — collect mystery ailments over the years and get sent from specialist to specialist, sometimes told they have multiple sclerosis or neuropathy, while their tests come back normal. A number of those ailments turn out to have been the drug all along, and some of them lift once it is gone.
The clinical trap is the second half. A patient realizes the medication is poisoning them and wants it out immediately, and pulling it too fast causes a fresh, separate injury.
Dr. Leeds reaches for an image here. It is like someone impaled by a metal rod in a car accident. The rod is doing harm, but you cannot yank it out at the scene without killing them. The benzodiazepine has to come out, and it has to come out slowly. About ninety percent of the time, he says, the work is telling people to slow down — and often they don’t take it seriously until they have already run into the wall.
What actually helps with the symptoms of a taper?
Everyone is different, and the same thing that steadies one person sets off another, sometimes only after weeks or months. With that caution stated plainly, a few things come up.
In Dr. Leeds’ experience, clonidine helps some people, used carefully because it has its own effects on blood pressure. He is interested in lofexidine, which works similarly but drops pressure less, though its cost has kept him from using it. Ketamine helps a subset of people, more during the taper than in protracted withdrawal. Magnesium is genuinely hit or miss. A small amount of medical cannabis from a legitimate dispensary — not smoked, not bought off the street — can ease sleep or anxiety for some and worsen it for others.
Barbara adds the caution that shapes every one of these conversations in her group. Some people coming off benzodiazepines develop serious sensitivities, and at the extreme that is mast cell activation, where the nervous system will accept almost nothing. In a community of thousands, those voices sit right next to everyone else’s, and they can frighten a person out of trying anything at all.
The gentler supports are where they agree most easily. Binaural-beats programs, including the Sacred Acoustics delta-wave recordings, put a lot of people to sleep. Grounding helps some. Aromatherapy can hardly hurt. None of these is a cure, but small, most-likely-harmless things stacked together are often what carries a sensitive person through. Barbara’s rule of thumb for anyone coming off a benzodiazepine is to stay as natural as possible.
Is diazepam still the right tool, the way Ashton described it?
Both of them think Ashton was onto something that gets thrown under the bus too easily now.
Diazepam is long-acting, and its tablets are weak enough to break into real pieces. Even short of the full crossover, Dr. Leeds finds that adding a little diazepam can move a stuck taper along, and it appears less toxic in every way than the high-potency benzodiazepines. The caveat is real: diazepam can bring on histamine intolerance, which is a serious problem for the person it happens to. Librium, weaker and longer-acting still, occasionally gets used the same way, but rarely.
The newer and more useful conversation, pushed by Mark Horowitz, is about long holds — staying put at a dose rather than pushing when a person gets stuck. Both agree the hold belongs to the patient. If someone is not ready to cut, they should be allowed to stay where they are as long as they need to.
Why are so many doctors still unaware of the benzodiazepine boxed warning?
In 2020 the FDA strengthened the boxed warning on benzodiazepines. It was a real achievement, driven in part by the adverse-event reports that the online groups helped surface.
And yet surveys by the Alliance for Benzodiazepine Best Practices find that most doctors still do not know the warning is there. By the time a patient can point to it, they have usually been prescribed the drug for years — which is why they are pointing to it.
Barbara puts the larger problem on both sides of the desk. Part of what her community does, she says, is help people think critically about how their ordinary distress got medicalized in the first place. A distressed patient who walks into an office tends to walk out with a prescription, because that is how the system is built. Dr. Leeds tells the story of an SSRI a doctor offered to one of his own children, barely eighteen, for mild anxiety, and his flat refusal.
The answer isn’t to turn against doctors. It is more time per patient — the direction that direct primary care and concierge models both point — and a real field of deprescribing, which is finally beginning to grow.
Can artificial intelligence help someone through a taper?
Barbara, a political scientist by training and a stickler for sources, was stunned to find better information in well-run online communities than in some of the published literature on benzodiazepine withdrawal.
She sees artificial intelligence as a way to pull credible guidance together quickly and cheaply, and to hold conventional and functional approaches side by side. The privacy concerns, she is quick to say, are not small.
Dr. Leeds adds a practical warning. These tools are weak at arithmetic but strong at writing programs, so the reliable move is to have one build a calculator rather than trust it to do the math itself. He has built an Ashton-style tapering calculator exactly that way.
How can someone find the Benzo Warrior Community?
The group lives on Facebook. It is free and easy to reach, which is most of why it is there, even if it is not the ideal home for it.
The written guides sit at the top of the group’s page, with one pinned post that lists the best tapering resources — the Ashton Manual and the deprescribing guidelines among them. There are weekly support meetings and a separate question-and-answer session over Zoom, where twenty or thirty people who are also going through it can answer a question faster than a book can. The speaker series, including Mark Horowitz’s talk on hyperbolic tapering, lives on the Benzo Warrior Community YouTube channel and is open to anyone.
Barbara also coaches, and takes on new people as her hours allow. She asks only that they send her a short note about what they need.
For anyone staring at the first cut, the reassuring part of this conversation is how ordinary the tools turn out to be. A small scale. A glass of milk. A percentage. Other people who have already done it. The medication comes out slowly, and it does come out.
The Rehab Podcast, hosted by Mark Leeds, D.O., features conversations like this one on dependence, withdrawal, and recovery — including Nicole Lamberson on benzo tapers and physician desensitization and a closer look at harm reduction for benzodiazepine tapering.
Full episode transcript
The transcript below is auto-generated and lightly edited for readability. It may contain minor errors.
Read the full transcript
Dr. Leeds: Barbara Connolly, it’s great to see you today.
Barbara Connolly: You too. Good morning.
Dr. Leeds: Good morning. So how are you?
Barbara Connolly: I’m good, thanks.
Dr. Leeds: So you’re the administrator of the Benzo Warrior Community. You run the community and it’s honestly, it’s my favorite benzo-related community and group on Facebook. And I just love the practicality that, you know, it seems to be, you know, more science-based and more useful compared to some of the, you know, pretty much compared to every other group as far as the information that people can get. I mean, to the, to the extent where, uh, it’s the one that I, I refer people to when someone is looking for a community. Um, so yeah, tell, tell us a little bit about, um, Benzo Warriors. Um, you know, I, I don’t know much about like how long it’s been around, how, how it got started and you know, what the mission and philosophy is behind it. So yeah, tell us a little bit about Benzo Warriors.
Barbara Connolly: So, um, I mean, first of all, thank you for the, for the compliments about the group. Um, Benzo Warriors was founded about 6 years ago, 6 or 7 years ago, um, by Michelle Goulevitch. And, um, she was somebody who had experienced a cold turkey kind of event um, while still taking a benzo from taking something else. Um, so she had one of these horrific, horrific, um, events where people didn’t understand what was happening, and she ended up in a wheelchair and all this kind of thing, and having to figure out, okay, what had gone wrong on her own. Um, which she did. Um, she did quite a lot of figuring things out. Um, and she was looking at the other benzo groups and kind of came to a similar conclusion as what you were articulating, that, you know, she thought she could do a better job, um, and she wanted to create more of a community too and get away from, I think, some of the scary and traumatizing groups and just create more of a vibe of people helping each other in a calmer atmosphere with better information. Um, and, um, When she passed 4 years ago, I took over the group and I was attracted to the group also for, um, having better, just good information, better information out there than most groups did, um, about how to taper and how to manage symptoms and just generally kind of a calmer atmosphere. So, um, it’s been sort of a labor of love that way. And, um, I mean, the purpose really was to raise awareness about benzo, benzo injury, to support people going through it. To support people coming off of not just benzos but really other psychotropic medications too, as they, as they discovered that they became a problem. Um, and so yeah, it’s got sort of, I think, multiple missions. It’s, it’s support, it’s education. Um, I think there’s even a little bit of an activist bent in there as people grow in an understanding of what has happened and how. And so it’s kind of all of those things together.
Dr. Leeds: Yeah. And I like the idea that I think that the how a person can get off of a medication safely and the ability to do it should be something available to everyone. And yeah, so, and not, you know, not everybody can, can do it the same way. And maybe people may be seeing a doctor, maybe a doctor prescribes the medication, but they’re not willing to work with them on a taper, or they don’t want to do the taper the way that the patient knows is the right way because they’ve done their research. And so there’s a whole variety of different ways. People can learn how to, to some degree, to taper on their own, or maybe they can work with their doctor, hopefully, and try to educate them. What different ways are available to people that they either want to work with their primary care doctor or their own psychiatrist or try to do something on their own?
Barbara Connolly: I mean, there’s a lot of information to— we kind of take people as they come. And there’s a lot of information to go either of those routes. So if somebody is working with a doctor who seems like they’re open to learning more, we can always sort of equip that person with a packet of, you know, good information to bring to a doctor. I have to say they aren’t all willing to read, which is really frustrating. But for example, you know, I will often say hand your doctor the Maudsley Deprescribing Guidelines or hand them the ASAM Deprescribing Guidelines and tell them this is how you want to do it. And that’s helpful for a lot of people. Or there are tools, the Alliance for Benzodiazepine Best Practices, has a set of patient tools that there are. Those are also like pamphlets that you can give to a doctor to help them navigate through the journey with you. So all of that is possible. Um, for the person who has to learn how to do it themselves because whatever, maybe they have a doctor who’s willing to prescribe but isn’t really willing to learn about how to taper slowly. Um, I probably have a different set of tools that I will fall back on. Um, still, the Ashton Manual is still useful in that way because it’s the one thing out there that’s written in clean, simple language. It’s accessible to everybody, even if it’s not necessarily completely up to date. It’s still, it’s still very useful as a background. And I could say, you know, read this and then ask questions. And from there, I think, you know, we can get most people through a safe taper. I will say, um, I love that the Maudsley Deprescribing Guidelines came out. I think it’s just a brilliant piece of work. Um, but it is dense and most people who are new to the community and already somewhat injured can’t get through it. Um, and so the challenge for me and for the people working with me in Benzo Warrior is kind of how do you distill some of the advice into short, simple language so that they can do it. Um, and I guess that’s where some of that is where moderating comes in and the feedback of the group is to be giving it, giving the information to people in bite-sized doses. And And then too, the Benzodiazepine Information Coalition has great information about tapering that’s also written in fairly simple language. And that’s available too, including the logistics of it. Cause if you’re working on your own and not with a doctor and not with a compounding pharmacy, then you’ve got to figure out how do you do it? How do you make the small cuts that you have to make? And nobody comes in knowing that. So we have to teach them that.
Dr. Leeds: Yeah.
Barbara Connolly: But all of that is available. And then, and then too, I mean, there’s a third option that some people end up using is working with a coach. So that’s where some of the advice on tapering is. It doesn’t get you a prescriber. But some of the coaches can definitely help with tapers.
Dr. Leeds: Yeah. And I would think a coach could be part of the other options also. Like a patient who’s working with an experienced doctor, a coach might be helpful, and definitely helpful in guiding a patient with tapering. Maybe if their doctor either is not helping them or partly helping them, Right. You know, the, maybe the doctor says like, okay, I agree with the taper. We’ll, we’ll do the, we’ll, we’ll go with the Ashton Manual. But, but the doctor doesn’t really know everything. So maybe the coach can kind of work in between like, this is what you need to tell your doctor, or this is how you, you can do it. So coach, a coach would seem to be useful in almost any situation.
Barbara Connolly: I mean, I find myself often playing that role as a coach, kind of the, the patient is the intermediary, but sometimes I’m having a conversation with the doctors, consider this, consider that, here’s this piece of information, you know, and I’m not overstepping and making medical decisions, but I am kind of saying, no, let’s not go this way and let’s consider that way, you know?
Dr. Leeds: Yeah. Have you ever been in that situation of having to communicate directly with someone’s doctor?
Barbara Connolly: I haven’t yet directly. I mean, I would and I could, but I haven’t yet. But you know, sometimes I’m on the phone and the doctor’s in the room.
Dr. Leeds: Oh, okay. Yeah. Yeah. And I’ve been in that situation with family members, you know, like, someone, you know, my mother or mother-in-law is in the room with her doctor and they get me on the phone and, you know, so, yeah, it’s kind of like you’re, you’re talking to the doctor, but not always directly, but helping out like right, right at the moment of the actual medical encounter.
Barbara Connolly: Exactly.
Dr. Leeds: So, but yeah, I’m, I’m interested in some of the, the ways that people taper on their own because it’s not things that I administer. Like when I work with someone, like if I wanted a liquid, medication, we’d order a compound from a compound pharmacy. Right. Or, you know, so things like cutting a pill. I mean, well, I do have patients cut pills to some degree. You know, like you can cut a pill usually like almost always in half, sometimes in quarters, and almost never anything smaller than quarters, at least not reliably. But I know that people do work with scales and maybe crushing or shaving tablets. And yeah, how does that work? Like, I guess like a 10-milligram tablet doesn’t actually weigh 10 milligrams, and then it has coating. Like, there’s like a whole—
Barbara Connolly: It’s got fillers in it that make it heavier.
Dr. Leeds: Yeah. So like, people would have to know to do a calculation, like a ratio of like, maybe say that— I don’t know how much a tablet would even— I don’t weigh tablets that much. Let’s say it weighed 100 milligrams, but the medication is 10. I guess you’d say 10 to 100 equals And then the ratio of what you’re looking for.
Barbara Connolly: I mean, yes, if they want to calculate what their dose is at any moment in time, they will have to. But practically speaking, for most of the taper, you can, um, abstract away from that calculation if you’re doing a hyperbolic taper. So like you’re reducing by 10% or 5% or whatever off of the current dose. Um, you can just do that calculation off the weight. And you’re still good. So, so you don’t have to be doing that. So just like a math, you know, every step.
Dr. Leeds: Yeah, like just a percentage of the total weight.
Barbara Connolly: Yeah.
Dr. Leeds: Oh, that makes— yeah, that makes sense.
Barbara Connolly: So yeah, people use— people use a jeweler scale so that they can get, um, an accurate enough weight to make the smaller reductions, or they do a liquid taper that they make themselves with, um, like some people do water tapers, some people do it in whole milk. Um, and those are reasonably successful methods for a whole lot of people. I mean, there are some barriers to compounding. There are doctors who won’t prescribe it, and then sometimes it’s just financially out of reach, or the insurance won’t pay for it. I had somebody a few weeks ago who was being quoted like $1,000 for compounded— some compounded benzo. So, and in, um, in California. And so just can’t do it. It’s just out of reach. So, you know, because then, hey, well, we have to do a water taper or milk taper.
Dr. Leeds: Yeah, yeah, there’s def— and there’s definitely variations in pricing with compounds that— one of my patients, um, with her previous doctor had been using a local compounding pharmacy, and, and we switched to the one that I was comfortable with, and she said the price was immediately half of what she’d been paying. So, um, I mean, they’re not— it’s not like standardized pricing, you know, that I guess. So there’s Yeah.
Barbara Connolly: But, but the scandal is for the pricing to get so high. It’s not rocket science to figure out how to make a compound.
Dr. Leeds: Yeah. And, and when you mention, uh, milk, uh, so some of these tablets are, are fat soluble. They, they dissolve in, or they’re fat loving. They will dissolve in a, in a, um, whole milk. Like it couldn’t be 2% or skim milk. Obviously you need the fat in the milk.
Barbara Connolly: You need the fat. Right. That’s why people are doing it.
Dr. Leeds: And we, like, for example, it’s like, clonazepam, which is probably the most prescribed benzo, would that probably be, uh, fat soluble?
Barbara Connolly: I believe so, yeah. I mean, there are nonetheless plenty of people who do it in water, um, even though, um, you know, it doesn’t dissolve that way, and they’re just, they’re just making a suspension and shaking it up really well and hoping that the particles are well enough distributed, you know. And most of the time it works okay, and then some of the time it really doesn’t, and you have to wonder if there are accuracy errors in that method.
Dr. Leeds: Yeah. And then milk doesn’t last forever. Probably people would have to know to maybe mix it every day or every few days or so.
Barbara Connolly: With milk, I would think so. Yeah.
Dr. Leeds: Yeah. But I mean, it’s interesting. I think even it has come up in conversations with patients of, say, that they can’t get the compound on time. We start talking about, I don’t know if we really had to, we could try that. But yeah, it hasn’t really come up practically than any of my patients have, have had to, to do, to mix their own, do their own liquid like that.
Barbara Connolly: No, I think it’s, I think it’s really daunting at first, and then once you get into it, you realize these methods are pretty simple. I mean, that’s why they get done over and over again. But I, I was in that camp of being so, so discombobulated and off-put at the, you know, when I was going through it, that I’m like, oh my gosh, I can’t figure out a water taper and I can’t figure out them scales, no way. And so I ended up using Valium and pills and just splitting, which is what a lot, a lot of doctors default to, right? It’s because it’s easy to like just to split the pills. I think now honestly we know better and that’s not really the best way. It’s okay, it’s adequate and it’ll work for some people, but it puts you into reductions that are larger than you should be making at some point.
Dr. Leeds: Oh, like with Valium, like the tablets, you can like, you have the smallest tablet is a 2 milligram, and if you can, if the smallest somewhat accurate as a quarter, like you can get to 0.5. Um, and then they do have the manufacturer, manufacturer liquid. I haven’t used it that much, but, uh, yeah, that 1 milligram. I did.
Barbara Connolly: That’s how I came off of the last piece of Valium, is switching to the manufacturer’s liquid, which, you know, is— it’s fine. It’s really easy to use. Um, it’s also got some stuff in it that isn’t ideal for some people and wasn’t ideal for me, but I didn’t, I didn’t really know enough at the time. But yeah, that’s a good way to go about it, is the manufacturer’s liquid.
Dr. Leeds: Yeah, yeah. I’ve had, that’s the thing. I’ve had a couple of patients that had a problem with it. So, we ended up going with a compound Valium. But at least that’s available, the manufactured one. Right. But, well, so, yeah. And I, so, I did a talk for you guys one time and I was like terrified. I honestly, I put it off.
Barbara Connolly: I remember you were nervous.
Dr. Leeds: Yeah. I put it off for a long time. I was like, because I was imagining like the, you said that there was a, so, you told me ahead, there’s a group and we’re going to, you’re going to talk to the group after. And I was afraid they’re gonna like tear me apart and like tell me I didn’t answer their questions, I didn’t talk about the right stuff, or they’re gonna attack me on things. And then it was nothing like that at all. They were like the nicest people. I, in fact, I, I, I love talking to them. They were like really asked great questions. They were friendly. They had great input also. So yeah, how, where does that, where did that group come from? Is that like a, a set group that has membership with Benzo Warriors?
Barbara Connolly: So we’ve had a Zoom group for several years. We sort of expanded the Zooms. There’s a group that meets— well, we have— we kind of expanded to multiple Zooms, but there’s been a group that has met weekly that is basically kind of a support meeting. And then we have another Zoom that is there more for like Q&A that’s more recently— that they’re there more recently just so people can pop in and ask whatever questions they need to ask and get them answered kind of efficiently. And I Um, a while into me running the group, I just— I started running the speaker series because I thought we need— in so many ways we needed more good information from people who knew what they were talking about, you know, doctors and coaches and people who’d gotten through it and all of that. There wasn’t enough of that out there 4 years ago, really. And so I kind of wanted to generate, um, some better information about a number of core questions, you know, about navigating the journey. And so having kind of that core Zoom group, we built a speaker series on top of that, which, um, yeah, we did, we did a whole bunch of talks and, um, they’re on— anybody can see them actually. They’re on the Benzo Warrior Community YouTube channel. So they’re, they’re right there and shareable. And it’s a, it’s a great series. There’s a lot of good talks in there on, on different subjects because, you know, there, there has come to be a fair amount about tapering. Like all of that information is available and is good and we needed other aspects of this journey. So there’s a lot of that there.
Dr. Leeds: Yeah, yeah, yeah. I love the, those lectures. I, I, I really like the, the Dr. Mark Horowitz, how he talks, he talks about the hyperbolic taper and, and, and which is important for people to know that in most cases you can’t just cut back in, in a linear way of, of just reducing by the same amount on a regular basis. Like, Like if some, say someone’s taking Valium, like you don’t wanna just go 1 milligram down every week or every 2 weeks because at some point you’re gonna hit a wall and, and, and probably people will find, figure it out naturally, like on their own. Like, wow, I can’t go any further. You know, that something’s changed, you know, at some point.
Barbara Connolly: Yeah. But they figure it out the way you mentioned. They figure it out by running into that wall. They figure out cuz they, they reduce too fast, they get in trouble and then they’re posting in the group, oh my God, oh my God, what do I do now? Right. And, um, I feel like we hammer the hyperbolic taper, or at least I do, to try to get people doing that from the beginning so that they don’t get injured along the way. Yeah. Yeah. Yeah. That’s, that’s a great talk. And he, he did that talk, I don’t know, 6, 6 months or a year before the Maudsley Deprescribing Guidelines came out. I love that talk. That was really, really valuable. And of course, since then he’s done about a bazillion talks educating educating doctors and patients and all about hyperbolic tapering. And he’s such a service to the community.
Dr. Leeds: Oh yeah, definitely. And one, one thing that’s interesting about that also is that on the beginning of the curve, the steep part, is that a person likely can, can go faster than they think they can in the beginning.
Barbara Connolly: So true. And, and at the very end too, faster than they think. So yeah, those are surprises. And honestly, so that gets a little lost. I mean, that’s, that’s kind of nuance and that’s there in the book and it’s there in the talk. And if you’re really following, you’ll pick it up, but people who are new, that’s more than, that’s more than you can somehow teach. You know, if you start talking to them about dose-response curves and, you know, and reducing by a percent of receptor occupancy, it’s too much, it’s overload. And so actually in the community, I like, I can tell people to read Maudsley and hope that they’ll take it in, but mostly they won’t, which is why in the, in the groups, the line that you’ll hear is more reduce, you know, 5, not 5 to 10, not more than 10% off of your current dose. It’s because it’s simple. It’s simple. People, people can absorb it. They can do it without making a mistake, but yes, it, it means that they go possibly too slow at the beginning and, and too slow at the end. But hopefully by the time that they’re, they’re at the end, they’re— they’ve absorbed more and they can actually be looking at, you know, a real hyperbolic taper and what the end looks like.
Dr. Leeds: Yeah.
Barbara Connolly: Yeah.
Dr. Leeds: At the end, the end is interesting because that curve never really, never really hits the baseline. Like if someone were to, to just mathematically follow it, they would never be done. They would be—
Barbara Connolly: well, exactly. Exactly. And if you, if you can handle some basic math, that gets real obvious real quick. But people miss that point. And so sometimes they’re dragging the tail out too much.
Dr. Leeds: Yeah. So how did— and I’ve seen that conversation come up, like, how does someone decide that they’re done? I guess when that jump just seems so small that, you know, that must be a scary thing for a lot of people to make that final jump and give up their medication finally.
Barbara Connolly: I think it is for some, for a lot of people. We still go with Ashton’s philosophy on that, that there is sort of, you know, a point even at a hyperbolic taper where you can just jump and be okay. Um, but yeah, there are, there are certainly some people who will taper down, I think, lower than they need to just because of fear. Um, and I don’t necessarily tell them not to do that if they want it to cost, it costs them some time that way. And, but it makes them feel more confident about stopping. Okay. That’s how it goes.
Dr. Leeds: Yeah. And there’s interestingly a lot of parallels in benzo tapering with treating opioid addiction. And I feel like that might even be an untapped resource that, you know, maybe there’s doctors that have experience in treating opioid addiction with buprenorphine. And maybe not all of them, because some of them do just kind of keep patients on indefinitely. But there are doctors that have experience in tapering and trying to get patients to reduce the dose. And you know, there’s a lot of similarities. And you know, I think that we’re very clear on like when a patient starts with, for example, Suboxone at 16 milligrams, they can pretty easily get to 8, relatively easily. They can’t just jump easily from 16 to 8, but they can kind of go even 1 or 2 milligrams at a time and then it gets harder. And then at 4 milligrams, it gets even harder. O2, it gets really hard, you know, like that, that same curve is there. And, uh, it’s kind of intuitive with that.
Barbara Connolly: I mean, I agree with you. I’m, so I’m a little unusual in that I came into this community from pain management. Um, cuz I have a, um, I have a underlying pain condition. And, um, so I had worked with, I mean, I’ve worked with multiple doctors in, in pain management, but the last one had, get an anesthesiologist background and yeah, some of them Um, the last doctor I worked with knew how to taper me well off of opioid therapy for pain. Um, but here’s the thing. I mean, those doctors, despite, despite the fact that they have, they have the knowledge, right, that there is that well of an understanding too, that the brain adapts to these medications. And so it needs to be slow, like that insight is there, but they’re typically not the ones who were prescribing the benzodiazepine. So there’s kind of the roadblock that they’ve been outsourcing that to usually psychiatry for a long time. And I don’t know that they want to own this problem.
Dr. Leeds: Yeah. Yeah. It’s just that that’s my background was in, and I do have a background also in pain management and then in opioid dependence treatment. And yeah, right away, like, you know, as I’m working with people with benzo tapering, you draw these parallels and you’re like, wow, it’s the same exact thing. You know, that it takes time. It can take a really long time. And you have to let the patient decide, you know, when they’re ready to make certain steps. You know, it’s very similar, that process of getting off of the medication. And maybe there is like a unified tapering theory or something that could be the same across anything that gets into the brain that you have to do it in a similar way.
Barbara Connolly: Mm-hmm. Um, yeah, I think so. And I think maybe sort of drawing these disciplines together, you might see a lot of progress, right? Bringing pain management and deprescribing psychiatry together.
Dr. Leeds: Yeah.
Barbara Connolly: That’s a conference. That’s a conference that needs to happen.
Dr. Leeds: Oh yeah, definitely. Yeah, there actually was, um, I don’t know if they’re still around. There was an organization, the American Academy of Pain Management, which was different from the American Academy of Pain Medicine. But I went to one of their conferences in 2008, and that’s what they did. They tried to bring every different discipline together, and they had this huge sign-in table for everybody. Like, there was a, you know, for the doctors, dentists, nurses, chiropractors, like everybody was represented, every possible field that could be. Yeah. And so that was their goal was to integrate everything, to bring everything together and get everybody’s perspective. And it was a great group. But I think when people have kind of turned on pain management later on that they— I think that they started losing their relevance, that they were credentialing doctors and then that credentialing wasn’t as useful anymore. But yeah, it was a great meeting though, just to see everybody brought together and that effort to bring everyone together.
Barbara Connolly: Yeah, that’s a really cool enterprise because that doesn’t get done nearly enough, trying to integrate the different disciplines. It’s one of my pet peeves about all of medicine. Like, as somebody who has like an underlying condition that’s very systemic, nobody looks at the system. Everybody looks at the part, you know, somebody takes care of your right pinky and somebody takes care of your lung and somebody takes care, you know, of your leg. And it’s like all different doctors. Ridiculous.
Dr. Leeds: Yeah. Yeah. Psychiatry is kind of a strange field. I mean, it just seems like— and I’ve been following conversations on Twitter or X or whatever of seeing what, you know, there seems to be like a group, and maybe it’s just the people I’ve ended up following, but like people turning on psychiatry and being very much against it, saying it’s just a broken field of, you know, that maybe it can’t even be fixed.
Barbara Connolly: You know, I was thinking about that problem last night because, um, one of the functions— not necessarily the purpose, but one of the functions of Benzo Warrior, and I think other— I think some other online communities, Surviving Antidepressants comes to mind, um, or Inner Compass, um, is I think an evolving consciousness about psychiatry even, even medicine more broadly, but psychiatry in particular, and what purpose it has served in people’s lives. And has it been helpful for them, you know, net-net? Because any— anybody who comes into a benzo group, they’ve had lengthy encounters with psychiatry, almost, almost by necessity, right? End up on a benzo and, and, and often on several other psychiatric medications also. Um, and by the time a person finds the online communities, they are, are, they’re likely already in some degree of trouble on this medication. That’s why, right? They’re searching withdrawal and withdrawal support or something like that. They’ve got some reason that they are questioning the med or they need to come off of the med. And, and then you get these people talking to other people with similar experiences. You start hearing some of the same stories over and over. Like, in a benzo group, you will hear, um, so many people who have developed, like, all these mystery ailments over the years, and they’ve gone from specialist to specialist to specialist. They’re really working it, and nobody can figure out what has happened. You know, the, the doctors are telling them, well, your tests are normal, you know, on to the next person, or, or you’re fine, and the person knows they’re not fine. You know, they know, they, they um, a number of things have gone wrong. Like, you know, people have stopped being able to drive and their memory has, has gone to pot and, you know, things like that. They know things are not okay. Um, you see those stories over and over again. You come to realize that, you know, a number of people, their mystery ailments were actually induced by the benzodiazepine over the years. Well, that starts to really change your view of the discipline, and even, even to some extent, the people who were continually prescribing it. It, it causes— I want to say this respectfully— it causes a certain lack of credibility. Um, so, and I think, you know, it gets on in the, like, that in Twitter or whatever we call it, X these days, it gets called anti-psychiatry and gets really sort of made fun of, and how dare these people. Um, but I guess what I want to say to people, you know, to professionals with that background, is that there are a number of people who come by this very honestly. You know, they started as part of the fold. They started going to psychiatrists for help. They were taking medications. They were doing what they thought they needed to do to get well. And then a certain number of people get so gravely injured and have lost quite a number of years of their, you know, productive lives to these mystery ailments And that’s really sad. And when those people speak up about, you know, to each other, to professionals, to whatever, about what happened, and they’re not necessarily listened to respectfully, that’s where anti, you know, this sort of anti-psychiatry stuff comes from. I mean, I feel like it’s a really honest, genuine perspective that I wish the field would listen to more carefully, you know. And I think deprescribing psychiatry is— I’m, I’m really, really grateful that over the last several years that the field of deprescribing is starting to take off and listen to these people more respectfully and help. You know, it’s got its, it’s got its limitations still. There’s not, there’s not enough of these doctors to come by and it’s hard to pay for and insurance isn’t covering it and all of this, but it’s a really important field and it needs to grow.
Dr. Leeds: Yeah. Yeah. It would be great to, to hear, like see at medical conferences, see lectures and you know, on deprescribing, which I don’t think I’ve ever seen anywhere. But to see it coming up now.
Barbara Connolly: Isn’t that amazing? Because I mean, that’s another of the things about medicine that you come to learn is there’s an awful lot of prescribing and very, very little attention to deprescribing until you’re in the geriatric space. You know, and even then, like not enough of it, but it’s there. But why isn’t it more attended to in the general population? And I have, have some answers about why that’s true that are more political economy. But, um, yeah, it’s, it’s really a limitation and it’s a blind side of the field. It’s embarrassing for medicine to have that kind of blind side that they’re not looking hard enough about adverse effects, deprescribing. It’s, it’s every bit as much of like an art and a science as is the prescribing.
Dr. Leeds: Yeah. Yeah. Um, yeah, a lot, a lot of these medical conferences, maybe all of them are to some degree. Sponsored by pharmaceutical companies. And I remember I haven’t seen a drug rep for a long time. I mean, occasionally we hear from them, but I pretty much stay away from them. But yeah, we used to, you know, I used to work in family practice and every day, like, they would hold up the whole office coming in, you know, suits and bringing in their rolling briefcase and presenting these big colorful graphs to us. And, but there was times, you know, early on, like, when I, You know, we’re still learning. I mean, you know, we’re always learning all the time. But, but early on, like, I felt like I didn’t know anything. And I would ask questions like, how long can I prescribe this medication for? And for a lot of medications, which would include psych drugs, and they were heavily promoting antidepressants, especially the SSRIs, they would say you can prescribe up to a year and then reevaluate. And then next question is, well, how do I reevaluate? Well, that’s up to your clinical judgment. You’re the doctor. And at some point you’re afraid to ask more questions like, oh yeah, maybe I should have known that. I guess I didn’t learn everything I should have about, about, you know, doing that reassessment of the year.
Barbara Connolly: Yeah. Yeah. I mean, and that gets the whole political economy of it all right, is that of course there are moneyed interests in the prescription aspect and in the generation of knowledge about the medications. And I— so I think one of the things I’m like personally embarrassed about is my training is political economy, right? I should understand money and interests and the vested interests. And I never really thought about medical knowledge in that way. I always thought of it as a little bit more of like a pure science. And, you know, with— I thought of it with more deference to doctors. Um, and if we’re any other aspect of the economy, I would have had a more critical lens, I think. And that too is part of the evolving consciousness, I think, that you see in online groups, is people learning to be more critical thinkers, perhaps too critical of thinkers, about whatever substance they’re putting in their body and who is recommending it and what is the, um, what care is going into that recommendation, which I mean, and you can speak to this, you’re a doctor in the system. It must be, it must be maddening to really not have enough time to do all of that really, really carefully to have a careful risk benefit discussion with each of your patients. Um, the system is broken in that way. I think that there just isn’t enough time compensated by insurance for that to happen in an adequate way.
Dr. Leeds: Yeah. Yeah, it’s difficult. And there’s a lot of literature, a lot to look at. And then sometimes you wonder like, what is this medication really going to do to the person and what side effects are likely? And some things are a lot less likely to happen. But yeah, I mean, people definitely need to have informed consent to as much of an extent as possible to know like what are they getting into. But especially with, you know, benzos specifically. And I think we, we know a lot more, we should know more in the last 5 years. You know, 2020 is when they, they put that new black label warning on the benzos. And a lot of doctors might not even be aware of that. Like maybe they haven’t checked back on the literature. They don’t even know that we know now that they’re more toxic than they, than we knew years ago when we thought they were safe to use forever.
Barbara Connolly: That’s right. Um, talk to, um, Bernie Silver now about that, you know, the research that they’ve done with the Alliance for Benzodiazepine Best Practices. And he’ll tell you, cause they’ve surveyed this actually, most doctors aren’t even aware of that black box warning, which is so frustrating because it was one of the huge achievements of, um, you know, BEG and the online groups that they, that they got enough, um, reports of adverse events in there to get that black warning to happen. It’s like, big, big accomplishment. But then does it move the needle? Not that much, actually. Yeah, I mean, a patient can bring that to a doctor’s attention. That is one of the things that they can point to, but by the time they are pointing to it, it’s too late. They’ve already been prescribed for a long time. That’s why they’re pointing to it.
Dr. Leeds: Yeah, yeah. And you know, it’s important that I think for all of us to be advocates for family and friends and people that we know of is because that came up with one of my adult children, like barely an adult, like 18. We went to a doctor and the doctor wanted to bring up prescribing an SSRI just for mild anxiety, like really for almost nothing. And I right away said, I said, no, we definitely are not interested in that. 100% no. And she just smiled and said, why do you think it’s addicting? Like, no, it’s not addicting. It causes dependence and toxicity and all kinds of other problems. And, you know, we don’t need that. But I think a lot of people would right away say like, well, it’s a doctor, you know, that they’re authoritative, they know what they’re doing, and maybe this is something we need. And so, I mean, how do you deal with that?
Barbara Connolly: I think in the discussion that, that I work on in, um, you know, in Benzo Warrior. I think part of that conversation is also on the patient side about the medicalizing of our own distress. Because yeah, I mean, of course you’re right that this stuff gets very freely prescribed and for often very casual reasons, and it shouldn’t be. But we don’t necessarily have the control to change that on the, on the patient side. But sometimes I will be blunt and tell people that, you know, maybe you need to stop bringing this problem to a doctor. I mean, depending on what the problem is, of course, right? But if the problem is like, you know, sort of an emotional distress kind of thing, and they’re complaining about how they have been hurt or how their doctor is treating them like they’re crazy or whatever, like the experience isn’t going well, then it’s, well, maybe you need to learn to sit with those emotions, or maybe you learn— need to, you know, learn coping skills or things like that. But maybe going to the doctor repeatedly is part of the problem, because I think people, um, they somehow forget that what is going to happen if they go to a physician and they’re, you know, and they’re really distressed by whatever symptom it is, that encounter is likely going to result in a prescription. Um, and that’s just kind of what this system is, right? And, and if you are in a position where that’s not the right answer for you, then you have to rethink having the encounters at all.
Dr. Leeds: Yeah.
Barbara Connolly: You know, maybe you go see a different professional.
Dr. Leeds: That, that’s interesting that, um, early on in, in my training, like when I was a, a student and a resident, when I would go into to see a patient on my own, Sometimes it just seemed to go on forever. Like, I would— I actually started to wonder in some cases, like, where does the visit end? You know, at what point are we done? You know, like, we can do— you know, I do the history, the physical exam, and then, you know, you quickly learn, you know, in a lot of cases it ends with a prescription. You know, people expect, what are you going to do for me? You know, what’s— how are you going to treat what I came in for and all the different things I brought up? And it becomes like a part of your training. Like, you start thinking in terms of, like, you know, what can I prescribe for this? Or how can I fix this problem? And it’s not necessarily that, you know, you’re not getting kickbacks from the drug companies. You know, you’re not— there’s no, like, evil motivation behind it. You really want to help the person.
Barbara Connolly: And right. And that’s the tools that you have.
Dr. Leeds: Yeah, exactly. And But yeah, I mean, it would be good, I guess, in a lot of, I mean, it would be good for people with, if someone comes in, you know, I’m stressed out, I’m feeling a little depressed, that the answer isn’t always a medication.
Barbara Connolly: Right. You know, a friend of mine has a counseling background and retired and then has gone back to work and is working in a family practice office for exactly this kind of thing. So his role will basically be to identify the people who really need to learn some coping skills, you know, how to manage anxiety, how to manage whatever, whatever sort of the emotional distress is that accompanies the medical problem, to— so that, so that the doctor’s office has a way to respond to this stress, but it’s not necessarily the prescription, and it’s not necessarily overwhelming the MD who might not be the right professional for all the problems that present there. I think it’s brilliant. I think it’s a good model. I think every practice, every family practice, you know, should have that person who is, I don’t know, a social worker or counselor or whatever who can help with some of the things that just require different professional training.
Dr. Leeds: Yeah. Yeah. Yeah. I think if we’re looking for doctors or even I should also say nurse practitioners, you know, people who are open-minded and maybe have time to like, to consider something like the Ashton Manual or the Maudsley Deprescribing Guide and learn something. There are doctors that are trying to break out of the system and go out on their own and start their own practices. There’s direct primary care, you know, doctors who I think part of their model is to spend more time with the patient. And it’s like a subscription model, like where your insurance doesn’t cover it, but it’s relatively affordable and you pay monthly to be, subscriber to a doctor and, and, and they, I think in a lot of cases have more time and, and, and maybe new doctors and new nurse practitioners, like new to practice, their own practice, like that they might be looking for things, things that they can do to help people. Like, you know, maybe they’re more open-minded, have more free time in the beginning.
Barbara Connolly: I do think that’s one model, the whole, the concierge practice where you’re paying sort of some subscription, hopefully modest to get more time. I think that’s a necessary part of our future. I mean, the system is so burdened, it’s just so overburdened by too many people, too many complaints, too much chronic illness, um, and it’s, it’s going to have to change a lot. You know, I’m like waiting for the big explosion where we just burn it all down and start over or something, because it really— there has to be some drastic change. But another thing that’s happening, honestly, that I find completely intriguing is artificial intelligence.
Dr. Leeds: Yeah.
Barbara Connolly: And the way we can use artificial intelligence to navigate at least through sort of this journey of coming off psychotropics. So what’s really interesting about like ChatGPT, for example, but I’m sure there are other engines you could use the same way, is it’s familiar with credible, very familiar with like credible online sources, and it can bounce between, um, allopathic medicine and functional medicine. So it can offer you kind of both approaches together. And honestly, I think, I think a I think in the future, a substantial amount of figuring out what you need from a doctor might be done that way because it can be done fast and cheaply. And I think it will— I mean, I think it might change the profession of medicine quite a bit, you know. And maybe part of the way it will change it is what I’m sort of describing, that it will reduce some of the load, you know, that you can ask— you can get artificial intelligence to listen to you for as many hours as you want and help kind of sort through your situation. And then maybe you can go to your doctor with more focused requests. We need, you know, can we do this test? Can we consider this medication? And, and maybe the encounter takes less time. That’s another— it’s another way we might evolve.
Dr. Leeds: Oh yeah, definitely.
Barbara Connolly: Because I, I, you know, I thought like these The— I’m a political science scientist by training. I’m a stickler for like, you know, good information, credible sources, good citations, all of that. And it blew my world open to be in a situation where I found more credible information online than was in journal articles. Like, I mean, I was really stunned to be reading some of the literature on benzodiazepine withdrawal and see how much it wasn’t capturing the experience of this substantial chunk of people. I’m like, wow, like, have published— published literature is supposed to be more accurate than that. And, um, and so like this, this, um, situation where artificial intelligence can go in and can capture good advice from like really well-established groups and sources and bring it together, it’s— that’s a big deal. It’s more open-minded.
Dr. Leeds: Yeah, definitely. Uh, I, I was listening to one interview with, uh, I think it was with Stephen Wolfram, the famous physicist and mathematician. He was talking about artificial intelligence, and he was saying that one of the, um, really great uses for it, uh, is that he said, for example, if he was doing research and had to read a million pages of content that would be the great use for it. Like, have the AI read the content for him. Let them read the million pages and distill it down to what he needs out of it.
Barbara Connolly: And that’d be brilliant.
Dr. Leeds: Yes.
Barbara Connolly: Then you could have AI do your reviewing for you too. That would be great.
Dr. Leeds: Yes. So it’s possible. I don’t know if it’s possible right now, but possible that the, you know, the, the, the Maudsley Deprescribing Guide could be offered in an AI form, you know, like where you can talk to it and ask questions and get what you need out of it.
Barbara Connolly: I mean, talk to Mark about that. He needs to do that. I know he was, he was talking about, um, coming up with another version of the deprescribing guidelines that were, that was written more with the user in mind, that simplified. And I think that’s necessary. Um, but yeah, interfacing with AI would be another way to do it. I mean, there are privacy concerns, right, that are not small.
Dr. Leeds: Um, yeah, true.
Barbara Connolly: But Yeah.
Dr. Leeds: And you can actually do that. Yeah. With, with the Ashton Manual, we can, I mean, it’s relatively short and it’s available by, in a PDF. So you can, you can actually hand that over to your, your favorite AI and say, you know, read this, you know, just paste it in and, and ask questions about it. Although I think a lot of the AIs have trouble with tables. Like you wouldn’t want to question too much about the tables, you know, as far as did you read that? And what do you think of, Although the information itself, the non-table parts of it, you know, of course it probably already knows a lot of it or it can read it out of the, that guide.
Barbara Connolly: But it probably does. I’ve never queried it about Ashton because I’m always like, you know, I’m querying about my own health stuff and it’s way down the line, like years off. So I ask different questions, but it knows a lot of this stuff about tapering because I ask, you know, I ask it about other tapering situations. And generally, you know, and I know enough to be able to screen. I know when I’m getting gunk and when it’s good information, and it’s, it’s mostly good, honestly. Um, and I’m surprised, I’m surprised by how much is there already.
Dr. Leeds: Yeah, one interesting thing for people, uh, considering using AI for, for tapering or for anything that involves calculations, um, they’re not especially good at math in a lot of ways. Like, it can make mistakes in math. So, but a better But they’re very good at programming. So you can actually get better results by asking, um, like Claude or ChatGPT or one of these AIs, just write me a program to do this calculation. Um, in fact, if you ask it to write a, uh, I know Claude, it actually has like a viewer. Like if you have it write a, a JavaScript program, it’ll, it’ll show it in the viewer. You can actually interact with it without even copying it anywhere else. So I’ll, I’ll actually say, make me a, a mobile responsive HTML JavaScript program that does this. And I’ve actually made an Ashton calculator with it, which is pretty fun to play with. And so yeah, if you make a calculator or like a program that does calculations, it can— it’ll actually be more accurate at math than the AI itself.
Barbara Connolly: Oh, how interesting. Yeah, I haven’t tried that. I mean, for our purposes, usually we have, we have some like some spreadsheets and some simple calculators that are adequate. You know, they’re more than adequate for the purpose so people don’t have to kind of come up with that stuff on their own. But yeah, that’s a great use of artificial intelligence.
Dr. Leeds: Yeah. Going back to the medications, what do you think of— you’ve probably seen a lot of this about medication toxicity. It seems like some of these, the high-potency benzos like Xanax, Klonopin, maybe Ativan, that these medications themselves are causing problems for people. Like, they’re, they’re really toxic, uh, and causing symptoms. And like you were saying, like, people being misdiagnosed— I’ve heard MS neuropathy, that people have all these weird symptoms going on, like, probably caused by the medication itself, that— and they may even just go away completely once they get off of it.
Barbara Connolly: Yeah, you know, I had— I was put on Klonopin as in my early 30s, um, because I was just— my body was just stuck and muscle spasms would not stop. And I was trying to teach and all of that, and I, you know, for a while I couldn’t until we got things somewhat calmed down. And, um, so I was kept on for a long time. I was kept on for 22 years. And, um, somewhere towards the end of that period of time I was having trouble remembering my new address. I had moved, but you know, I could not commit to memory the new address. I was losing the ability to drive. And I just thought, you know, the underlying stuff is getting worse. I’m getting older or whatever. Um, I did not realize then that it was a benzo doing it to me. And I don’t think you would have been able to convince me back then that that was the problem. It took the whole experience of coming off. And having these things come roaring back to real, you know, to, to know for sure, oh, that’s why. That’s like, I don’t have a problem driving now, and I certainly don’t have a problem remembering stuff. Um, so yeah, there is, there is toxicity. I think, I think what is hard is sorting out, um, the effects of being on this medication long term, the toxicity that’s happening from that versus the way people come off and kind of the secondary injury that comes from doing that too fast. And I don’t know, I mean, you must do this like clinically. I, I think that’s really hard to figure out like which is which and how to respond appropriately.
Dr. Leeds: Yeah.
Barbara Connolly: Yeah.
Dr. Leeds: It’s, it’s a difficult thing for people to realize that they’re, they’re taking poison, but they can’t give up the poison too quickly. Um, very, yeah, it’s almost like, like the you know, situation where someone’s been in a car accident and they have like a metal rod stuck through them, and, you know, the EMTs show up and they’re like, you can’t take it out yet because if you take it out, it’ll kill them. But, you know, we have to leave this foreign object stuck in the person until we can safely get it out.
Barbara Connolly: Isn’t that right? That’s, that’s a great analogy. Yeah, I think, um, I probably 90% of the time I’m having to tell people, slow down, slow down, slow down, because you’re right, they, they get get to a point of realizing that this medication is poisoning them, and then they want it out, like, out, out, damn spot, right? Get it out right away. Um, and even if you tell them to slow down, they still are pushing too fast, too fast. And, and, and very often it’s not until they have really run into a wall that they sort of take you seriously, that no, you have to do this slowly.
Dr. Leeds: Yeah. And, uh, and you’ve probably seen that there, there are medications that can help along the way, like with the effects of withdrawal and difficulties in tapering, which is hard to deal with because everybody’s different. And I know, and some people are set on not taking any other medications, and you never know if someone’s going to have a reaction to something because everybody’s different. You know, someone might take magnesium and it’s great. Another person might have a terrible reaction to it, or they may even, it may work great for a while and then A week, 2 weeks, months later, they may have a reaction then. Like, you just never know how a person will respond to a particular supplement or medication that’s supposed to be helping them.
Barbara Connolly: What’s, what’s your list of like top things that you think are helpful?
Dr. Leeds: Um, I found for some people, uh, clonidine is helpful. And I’m actually interested to see if I haven’t tried it yet. Uh, lofexidine (Lucemyra), which is similar to clonidine. That it’s used for opioid withdrawal symptoms. And so if clonidine is helpful, lusimira should be just as helpful or maybe even more so because the benefit is it doesn’t lower blood pressure so you can take it more often. So, and you know, but I just haven’t had the experience because it’s extremely expensive and insurance would never cover it for an off-label use. So, but yeah, clonidine does help. You have to be careful because it’s does have its own side effects and it’s not good to take it too much, but that can help. As far as other things, yeah, I mean, it all— everybody’s different and magnesium I’m careful with because sometimes people do great with it. Sometimes it causes a reaction. Interestingly, I know there’s some people really against it, but ketamine is useful for some people, not everybody. And I think maybe Maybe more so during tapering. I don’t know about protracted withdrawal. I haven’t really seen it help people in that situation.
Barbara Connolly: More tapering. I can see that. I mean, I’ve seen that one go both ways. Um, I think that the piece that is really difficult to navigate about adjunctive medications— well, it’s two things. It’s one, the doctors that people are going to, they don’t know anything generally about what can be added that might help and what to avoid. They just, they just have no concept of like there are things that need to be really, really avoided. And then the patient brings that up and that conversation rarely goes well. Um, so that’s part of the problem, which is just kind of knowledge. But then there’s a second problem that crops up, I think, in people who are coming off of benzos. And I don’t know how much this happens with other psychotropics, but this thing where, um, people develop really serious sensitivities. Um, and at the extreme, maybe that’s mast cell activation. And then the, you know, the body and the nervous system just won’t accept these substances, you know, any of them really. And that’s really hard to navigate because sometimes, sometimes you will get that person who that’s what they’re going through and they just can’t tolerate anything. They can’t. And then, but then in like the online groups, you have those people mixed in with everybody else. And, you know, they’re talking about their sensitivities and now everybody else is afraid to try anything. So I think it’s, it’s a real mix. It’s one of the hard things about being in an online group and Benzo Warrior is larger these days. It’s over 5,000 people. You, there are limits to which you can discuss an individual situation. And of course this journey is individual, right? People are different and they, and they, they need different things. They respond to different things. They have different vulnerabilities. So we say like, we’re, you know, we’re in like one big classroom and I’m often talking to the classroom, but that doesn’t take away the need for the individual to be having a more specialized conversation about their own needs.
Dr. Leeds: Yeah. Yeah. As far as other adjunct medications, one thing that I’m not involved with the system for this at all, but for some people, a little bit of medical cannabis can be helpful. Usually not too much and not getting carried away with it. And I’m, I don’t really approve of anybody smoking it, but I’ve had patients where occasionally taking like a piece of a gummy or whatever, like an edible, you know, might be helpful for either sleep or helping to get through some anxiety. And I know that can go either way also, you know, sometimes it makes people more anxious. So if you’ve seen that, that can help sometimes.
Barbara Connolly: So personally, not— I haven’t seen a lot of it. I mean, I think that is true both ways, that it can, that it can help some people quite a bit and that it can bite people back, um, some of them. But I don’t, I don’t personally see a lot of the conversation, which is sort of a Facebook thing. Facebook, um, would— oh yeah, it would, it would destroy our group if I allowed that discussion. So I just tell people to go talk about that somewhere else.
Dr. Leeds: Yeah, yeah, that makes sense. It’s And it’s not something that I recommend, but if someone says, I can’t sleep, is it okay that I took a quarter of a gummy to help me get to sleep? My response would be like, never get anything off the streets. But if it’s from a legitimate dispensary or pharmacy, then that’s different. And it’s probably a lot less toxic than any medication that I could prescribe. It’s way less toxic than the benzos or SSRIs or antipsychotics or anything else that somebody might prescribe. To help you get to sleep.
Barbara Connolly: Yeah, that’s a good point. Because, you know, people ask that one all the time. What do I do about sleep? If, you know, and my first answer is taper in a way that you don’t lose sleep. But if they’re, you know, if they already have, then what? That’s a really hard question.
Dr. Leeds: Yeah. Yeah. And there’s other things. I mean, of course, anything that’s not medication, like any kind of a meditative or like a sound program, like there are these binaural beats programs that help me a lot to fall asleep for a long time. And you know, it’s kind of a meditative thing where you hear like a sound, like a progressively slowing down over time. And it just kind of, yeah, I would just fall asleep every time. And there was one program from this company, Sacred Acoustics. They have this delta wave binaural beat program that seemed to help a lot of people. And you know, it’s not that I’m like recommending their product or their company, but it just, that one program just seemed to be really relaxing. And this one is kind of a weird one that, that, um, I don’t know if it’s real or pseudoscience, but, um, grounding sheets. Have you heard of those? Like sheets or blankets you can plug in?
Barbara Connolly: I have. I’ve never tried it, but you know, and at first for a few years I was really skeptical about this kind of thing. And now if I see a signal where people are trying something and they say it helps, I’m like, okay, I don’t care how it works. I’ll try it.
Dr. Leeds: Yeah. Yeah. It’s something that you can get on Amazon Prime and return it if it doesn’t work. You know, they’re not that expensive. So, and I mean, it kind of makes sense, you know, if you plug it into an outlet and it only connects to the grounding part. So you’re supposedly grounding yourself to the ground, you know, just like if you walked outside and took your shoes off and stood in the grass.
Barbara Connolly: Which I have done that during the phase when I felt like I was just, you know, surging electricity everywhere. And it helps. It does help.
Dr. Leeds: Yeah. Yeah. So, and yeah, I don’t, I don’t think it can, can hurt really. So, uh, yeah, I mean, that’s another, you know, people can look at things, you know, that are possibly helpful and most likely not harmful, you know, balancing out risk versus benefit.
Barbara Connolly: Yeah, I agree. I mean, I think, um, because I’m one of these people who’s just super, super sensitive. And so it, it took piling together some of those smaller things, smaller interventions, like most likely harmless. Maybe it won’t help, but it’s most likely harmless. It’s just doing several of them. That’s what gets you through. Yeah.
Dr. Leeds: Yeah. Like aromatherapy. Aromatherapy almost can’t be harmful, you know, unless it’s like a something that you have a negative association with or something like, like I, there’s one I don’t like. I can’t think it’s one of the most common aromatherapy scents and it just bothers me. But, but yeah, generally, I mean, smelling something is not going to hurt a person and, you know, you can, you know, and there’s all levels of that. You can get like the easy, like over-the-counter at a store, you know, they have whatever stores like Bath and Body Works, or you can go to like a professional aromatherapist and, you know, get like the high quality things and recommend it to you. You know, I guess it depends.
Barbara Connolly: I think, I think what makes sense for somebody coming off of benzo is to go as natural as possible in this kind of stuff. Cause it’s like, it’s the more chemical sense that will cause trouble. I think that more natural stuff is probably harmless.
Dr. Leeds: Yeah, that’s true. Yeah. And there are, yeah. And then there’s talking about other things people can try. Like there’s, what do you call them? The probiotics. Probiotics can be helpful, although I think there might be a couple that are to be avoided. But generally probiotics might be helpful for people with histamine sensitivity. There’s that DAO enzyme that can help.
Barbara Connolly: It can help. That’s really hit and miss whether it actually does in inside the benzo community though. And I don’t quite know why, because like in theory, yeah, it should help more people. Probiotics, I think, are tricky even with like with histamine sensitivity. Believe me, I’ve tried a bunch of them. Um, and I think particularly the person with histamine sensitivity, they need to look for one that is formulated for that problem because the others can increase histamine.
Dr. Leeds: Yes. So I’m trying to think of other— I’d say as far as a medication that’s helpful for a lot of people, actually, diazepam is a top one. I really like the Ashton Manual, and I feel like that she was on to something. Dr. Ashton was. Really onto something, maybe more so than just practicality of, of diazepam is longer lasting and you can, the tablets are weaker so you can break them in pieces. You know that some people look at it like that. I think that that’s like the old-fashioned way and now we have compounded liquids and now we can try tapering on the benzodiazepine you’re on. But I found for a lot of people, maybe across the board, that when they’re having difficulty with doing a liquid taper, that Even if you don’t do the full Ashton manual method, like even just adding a little diazepam can help move a taper along. Um, and it seems to be less toxic in every way compared to the more potent ones.
Barbara Connolly: Isn’t that interesting? Yeah, you and I have had this conversation some. I, I think you’re right. I think Ashton gets a little thrown under the bus these days and, and maybe inappropriately. Um, cuz I certainly see plenty of people who are still helped by Valium. I don’t see what you mentioned, sort of adding a little so much, because doctors don’t try that. But, um, but I see that, you know, I see people who are helped by the crossover still. Um, but I think, I think there are some liabilities with Valium that are maybe insufficiently appreciated. Like, I think Valium causes histamine intolerance, and that’s a big thing if that happens to you. Um, But there, I mean, there isn’t, there isn’t a way of coming off that is perfect, right? And so things have to be tried.
Dr. Leeds: Oh yeah, definitely. And I wonder about Librium, you know, which is, that’s what would almost seems like it would be the Valium of Valium. Like it’s even weaker and longer lasting. And maybe that, I think it may have been tried. You know, I’ve heard of people taking it. As a crossover medication to taper off of, but not too often.
Barbara Connolly: Not too often. I mean, I can think of like one prominent person who tapered that way and it was really rough. And I guess I’ve come across a few others who have done it, but that so seldom gets used.
Dr. Leeds: Yeah. Yeah. And maybe it would be helpful, like for a person that did the Ashton method and now they’re kind of stuck at a certain point on Valium and maybe Doctor might try switching over to that or blending them together. You know, there’s all, I guess, a lot of things you can try, you know, when you get stuck that again might be helpful and not too harmful.
Barbara Connolly: You know, lately the conversation about, you know, what to do when you get stuck is all about long holds and the virtue of long holds. Yeah. You know, as opposed to trying something different just just stay put, which you can thank Mark Horowitz and to some extent Nicole Emerson for pushing that conversation, you know. And I think I’m glad that the conversation is happening, and I think we’re developing sort of more evidence about how that goes, you know, in real time because more people are trying and understanding what a long hold actually means.
Dr. Leeds: Yeah, yeah. Well, I definitely agree that that should be patient-directed. If a patient is not ready to to reduce their dose, that they should be allowed to hold as long as they feel comfortable doing it.
Barbara Connolly: Um, you know, I feel like there’s more pressure these days to come off and come off fast than there used to be. For a while, I thought we were making so many— so much progress, and people who were learning how to taper, and there’s like less people posting in like Horribles of Stress in the community. We’re getting better at this, we’re getting better at this. But then the last, I don’t know, 6 months, at least 6 months, there are so many people coming off who are either cold turkey or they’re being pressured into an overly rapid taper. It’s worse lately.
Dr. Leeds: Yeah.
Barbara Connolly: And I don’t know whether that’s backlash from like the awareness efforts and, and doctors just being really scared at this point to prescribe this stuff. Longer term. Um, it’s— I think some of that, and I think it’s some of people just rushing, that they come to believe that, you know, that a benzo or another psychotropic is the problem, and then they rush off too fast and they do it to themselves. But it is a thorny problem.
Dr. Leeds: Yeah, it— there, there’s definitely pressure. I see this all the time. There’s definitely pressure from pharmacies pharmacists that want to know why isn’t the taper moving along? Because, you know, especially like if you’re doing that cross taper, and I think that’s probably what makes a lot of doctors uncomfortable with Ashton, of that you have to prescribe for a period of time two benzos at the same time.
Barbara Connolly: Yeah. Yeah.
Dr. Leeds: Yeah. But even beyond that, you know, they want to know like if this is a taper, why are we not going faster? And I actually had a pharmacist that And I bring up Ashton a lot. I’ll say, well, we’re doing this, you know, but relatively, you know, by the Ashton Manual. But as we’re doing it, you know, as the patient can tolerate, so it’s not at a certain rate or whatever. But there was a pharmacist that had looked up the Ashton Manual and she said, this is the stage you should be at now and you’re not there yet. You know, I’ve calculated the weeks and dosage and you should be— I mean, she even named it. She said you should be at stage 12 and you’re only at 9, and why haven’t you moved further along? You know, and, uh, and, and it said on the very first page, right after the table of contents, there’s a page that says that the taper should be patient-directed, as the patient can tolerate. You know, it’s, uh—
Barbara Connolly: I know it always was one of the problems of, of using the Ashton Manual was people, they go to the charts, they read the charts, and they don’t read the words. And I’m like, don’t do that. Like, never mind the charts, read the words, because that’s where all the important stuff is. And that’s where you get the idea that, oh, this needs to be as slow as patient can tolerate, and the charts are just illustrative.
Dr. Leeds: Yeah, yeah, just a guideline. It’s not meant to be that you follow that exactly as it’s written.
Barbara Connolly: But that’s unfortunate that a pharmacist would be— and I, I, I certainly have heard of pressure from pharmacists and pharmacists cutting the person off because they ask too many questions or variations on that theme. I mean, they’ve got their own liability concerns, so I kind of get where it’s coming from, but Maybe, maybe that says that there’s more of a need for education among the pharmacists too. I’ve seen the other side of that too, where sometimes the pharmacist will be the person who is really good figuring out how to taper and really helpful for the patient in a way that sometimes the doctor isn’t aware enough.
Dr. Leeds: Yeah, yeah, yeah, yeah. I see like pharmacists that they might have a problem with, uh, 40 milligrams of Valium, 40 milligrams a day daily. And, but they would have no problem with Xanax 4 milligrams a day, right? You know, which is twice as strong. You know, it’s like equal to 80 milligrams of Valium. And then it’s like, well, we already cut the patient in half with their dose and you still have a problem with it because it looks like more.
Barbara Connolly: Yep. I know it’s bananas. People don’t understand the conversions.
Dr. Leeds: Yeah. Yeah. But that’s, um, so, um, yeah. So, so yeah, just You know, like I said, I love the group. Do you think your group is like a good place for like, you know, say that someone has called around and they just haven’t really found a doctor that they want to work with and, you know, they want to taper. Can a person get like all the guidance that they need? You know, I know that it’s not just the interaction, but you also have a lot of guides. That’s one thing I saw that— how does a person get to those guides? Because I’ve I’m not really good with Facebook, you know, so I’ve had trouble like, like finding— like, is it— are they actually like PDFs, or like, how do you find those guides?
Barbara Connolly: So they’re, they’re built in. They’re kind of— if you go into the group, they’re at the top of the page. And you’re— so usually people default and, um, they’re in discussion mode, if you can see what people are posting. But if you go to the top of the page and you can see like the discussion menu, I think the guides menu is just to the right of that on a computer. So actually, it’s not that— it’s not that hard to find. If anybody is struggling, they just ask and we can screenshot and show exactly where, but, um, you know, they’re extensive. There’s really, really, really a lot of material there, um, of not taking the time to streamline perhaps as much as should be done. So like that, the information on tapering is kind of all in a couple of guides. It’s like in the Ashton Manual, and then there’s another guide that’s got a whole bunch of practical information on tapering. So that’s pretty easy to find actually.
Dr. Leeds: Okay, yeah. So, um, yeah, so someone goes Get Started, that, that would be a good place to start, you know, uh, to start looking through the guides and reading through and seeing what’s in there.
Barbara Connolly: Yeah, and, and, and I have, um, there’s like one post that we keep in a, like, in the announcement section that’s got sort of the best resources on tapering. So it’s literally, it’s, you know, just one, one post that says, you know, read the Ashton Manual, read the Deprescribing Guidelines. Um, so it’s all right there and it’s really good information. I think the trouble is it’s, it’s more it’s often more than a person can digest who comes into this community and they’re already kind of in trouble and they realize they need to taper and they, they’re, people are, you know, they’re sometimes having cognitive issues, right? And they actually can’t sit down and read a difficult book. Um, so that, that’s where you get into more people posting and asking for information that way, you know, cause they’re just struggling with stuff that’s in the guides. And we’re used to that too, you know, we sort of respond to whatever form of— we try to respond to whatever form a person needs. And, you know, like, the Zooms can be a really good place to ask that information too, because you’ll get, you know, 20 people, 30 people who are all also going through it, and you can get your questions answered pretty well that way by somebody who knows more than you do.
Dr. Leeds: Yeah.
Barbara Connolly: Yes.
Dr. Leeds: And how is your availability with coaching? Are you available to pretty much most people or anyone that wants to sign up with you for that?
Barbara Connolly: So I have some availability. I definitely can take on new people. I have not been working with a ton of people at once because I’m doing other work and trying to manage the group and all of it. So I only have so many hours. But I am happy to help people with tapers. Um, and I’m happy to support people who are in a different phase. I’m like happy to help them manage symptoms and learn coping skills. And, um, and I can handle somebody who’s post taper, you know, and needing support too. Um, I usually, I ask people to tell me a little bit about what they need and, um, occasionally I won’t be the right fit. Occasionally I might sort of suggest somebody else. Um, but if they sort of fit into the orbit of things that I can help well, um, I’ll usually find a way to say yes.
Dr. Leeds: Yeah. Yeah. That’s, that’s really good. And, and how, how would somebody find you? Like, would it, I don’t know if you, like, if they, as a coach.
Barbara Connolly: So right now I actually ask people to just email me and tell them, tell them, tell me what they need. Just a short email. Um, so it’s, um, barbara.connolly.31@gmail.com. Um, that’s the easiest way. Or, um, people can find me in Benzo Warrior too. I’m pretty accessible in Benzo Warrior.
Dr. Leeds: Yeah, yeah, definitely. So yeah, that’s really, really good. Um, and I was thinking that, you know, when we’re talking about guides, you know, getting back to AI, like, I, I always imagine, like, right away think of that, like, you know, of training like a chatbot to And they’re not always easy to train. You know, some of them claim to be like, like, just give us the website address and we’ll read the whole website, and they don’t really do it like that. You know, I think there’s an art to training a chatbot to really be able to answer questions accurately. But that’s just, I think, an interesting project to work on, that of training one of these things to interact and answer questions even better and be trained on the material.
Barbara Connolly: I mean, wouldn’t that be great? Because right now I have to like train a whole team to be able to answer all the questions, and that’s a It’s always like an ongoing project because people get better and they move on. And it would be brilliant if that could be more automated. Yeah, I think there’s a, there’s a Reddit community, um, and Jake Ressler is doing the mod in there, and I’m pretty sure he has automated some of the responses in there because he’s got a huge load of people. And I think that’s how it gets managed, just, you know, to some degree. Yeah.
Dr. Leeds: Yeah, that’s true. I guess in some places you can have a chatbot. I know on Discord you can have that, like, like you can have an AI chatbot as part of the group talking to people.
Barbara Connolly: Huh. Yeah. I mean, there, I know there are better ways to do this. And then like someday Benzo Warrior should be moved to a different platform too, because Facebook is not necessarily the ideal platform. It has the virtue of being free and easily accessible. And there’s sort of a certain demographic of people that’s already on. And so you know, we’ve kept it that way to keep it free and accessible. That’s not the best way to do it.
Dr. Leeds: Yeah, yeah, I know, I know that that’s— I’ve seen that you have to talk in code to be careful not to get caught by Facebook with the, um, exactly right.
Barbara Connolly: And that’s like, so for anybody who’s sort of looking to join, I would say like we have a number of rules which are a little off-putting at first, and that’s the exact reason, is to get along with the platform and not have the group kicked off in silence because that, that happens. Um, So yeah, that’s annoying, but it is, it is what it is, and we learn to live with it.
Dr. Leeds: Yeah, definitely. So, uh, Barbara Connolly, thank you again. Thank you for joining me today.
Barbara Connolly: You’re so welcome.
