Barbara Connolly, PhD, on Safe Benzodiazepine Tapering and the Benzo Warrior Community

Dr. Mark Leeds [00:02] Dr. Barbara Connolly, it’s great to see you today. Good morning. So how are you? So you’re the administrator of the Benzo Warrior community. You run the community, and 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 extent where it’s the one that I refer people to when someone is looking for a community. So, yeah, tell us a little bit about Benzo Warriors. I don’t know much about how long it’s been around, how it got started, and what the mission and philosophy is behind it. So tell us a little bit about Benzo Warriors.

Barbara Connolly, PhD [00:58] So, I mean, first of all, thank you for the compliments about the group. Benzo Warrior was founded about six years ago, six or seven years ago, by Michelle Gulevich. And she was somebody who had experienced a cold turkey kind of event while still taking a benzo from taking something else so she had one of these horrific horrific 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 which she did she did quite a lot of figuring things out. 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. And she wanted to create more of a community to 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. And when she passed four years ago, I took over the group and I was attracted to the group also for having better, just good information, better information out there than most groups did about how to taper and how to manage symptoms and just generally kind of a calmer atmosphere. So it’s been sort of a labor of love that way. And I mean, the purpose really was to raise awareness about 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 discovered that they became a problem. And so, yeah, it’s got sort of, I think, multiple missions. It’s support, it’s education. 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. Mark Leeds [03:10] 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 not everybody 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 that people can learn how 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, PhD [04:07] 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. It’s 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 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 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 benzo best practices has a set of patient tools that there 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 for the person who has to learn how to do it themselves because maybe they have a doctor who’s willing to prescribe but isn’t really willing to learn about how to taper slowly. I probably have a different set of tools that I will fall back on. 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 that’s accessible to everybody, even if it’s not necessarily completely up to date. 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 I love that the Maudsley Deprescribing Guidelines came out. I think it’s just a brilliant piece of work. But it is dense. And most people who are new to the community and already somewhat injured can’t get through it. And so the challenge for me and for the people working with me and Benzo Warrior is kind of how do you distill some of the advice into short simple language so that they can do it 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 then to the Benzo Information Coalition has great information about tapering that’s also written in fairly simple language And that’s available to including the logistics of it, because if you’re working on your own and not with a doctor, not with a compounding pharmacy, then you’ve got to figure out how to 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. 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. You know, 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. Mark Leeds [06:57] 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. And, you know, maybe if their doctor either is not helping them or partly helping them, you know, maybe the doctor says, like, okay, I agree with the taper. We’ll go with the Ashton manual. 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. This is how you can do it. So a coach would seem to be useful in almost any situation.

Barbara Connolly, PhD [07:36] I mean, I find myself often playing that role as a coach. Kind of 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. Mark Leeds [07:53] Yeah. Have you ever been in that situation of having to communicate directly with someone’s doctor?

Barbara Connolly, PhD [07:59] 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. Mark Leeds [08:09] Okay. Yeah. Yeah. […] So, but yeah, I’m interested in some of 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, you know, we’d order a compound from a compound pharmacy. Or, you know, so things like, 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. That’s right. Yeah, how does that work? I guess a 10-milligram tablet doesn’t actually weigh 10 milligrams, and then it has coating. That’s right. There’s like a whole…

Barbara Connolly, PhD [09:18] It’s got fillers in it that make it heavier.

Dr. Mark Leeds [09:20] Yeah, so people would have to know to do a calculation, like a ratio of like, Like maybe say that, I don’t know how much a tablet would even, I don’t weigh tablets that much, but 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, PhD [09:37] 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 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 you can just do that calculation off the weight and you’re still good so you don’t have to be doing that so just like you know

Dr. Mark Leeds [10:06] Every step yeah like just a percentage of the total weight yeah that makes yeah that makes sense so

Barbara Connolly, PhD [10:12] Yeah people use people use a jeweler scale so that they can get an accurate enough weight to make the smaller reductions, or they do a liquid taper that they make themselves with, like some people do water tapers, some people do it in whole milk. 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 California. And so just can’t do it’s just out of reach. So, you know, well, we have to do a water taper or a milk taper.

Dr. Mark Leeds [10:59] Yeah, it is. And there’s definitely variations in pricing with compounds that one of my patients with her previous doctor had been using a local compounding pharmacy and we switched to the one that I was comfortable with. And she said that price was immediately half of what she’d been paying. So, I mean, they’re not, it’s not like standardized pricing, you know, that I guess. Yeah. But the-

Barbara Connolly, PhD [11:21] It’s kind of scandalous for the pricing to get so high. It’s not rocket science to figure out how to make a compound.

Dr. Mark Leeds [11:26] Yeah. And when you mentioned milk, so some of these tablets are fat soluble. They dissolve in, or they’re fat loving. They will dissolve in a whole milk. It couldn’t be 2% or skim milk. Obviously you need the fat in the milk. You need the fat, right. That’s why people are doing it. And like, for example, it’s like flanazepam, which is probably the most prescribed benzo. Would that probably be fat soluble?

Barbara Connolly, PhD [11:51] I believe so. Yeah. I mean, there are nonetheless plenty of people who do it in water, even though, 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 OK. And then some of the time it really doesn’t. And you have to wonder if there are accuracy errors in that method.

Dr. Mark Leeds [12:17] Yeah. And then milk doesn’t last forever. Like probably people would have to know to maybe mix it every day or like every few days or so.

Barbara Connolly, PhD [12:27] With milk, I would think so. Yeah.

Dr. Mark Leeds [12:29] Yeah. But I mean, it’s interesting. I think even like it has come up in conversations with patients of, you know, like say that they can’t get the compound on time. You know, we start talking about like, I don’t know if we really had that we could try that but yeah it hasn’t really come up practically than any of my patients have had to do to mix their own do their own liquid like that

Barbara Connolly, PhD [12:49] 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 was in that camp of being so discombobulated and off-put at the you know when I was going through it then I’m like oh my gosh, I can’t figure out a water taper and I can’t figure it out in scales. No way. And so I ended up using Valium and pills and just splitting them, which is what 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. Mark Leeds [13:31] Oh, like with Valium, like the tablets, you can, like you have the smallest tablet is a two milligram. And if you can, if the smallest, somewhat accurate as a quarter, like you can get to 0.5. And then they do have the manufacturer, manufacturer liquid. I haven’t used it that much, but one milligram.

Barbara Connolly, PhD [13:48] I did. 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. 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. Mark Leeds [14:06] 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 at least that’s available the manufactured one

Barbara Connolly, PhD [14:16] Right but

Dr. Mark Leeds [14:18] Well so yeah and I so I did a talk for you guys one time and I was like terrified I honestly remember

Barbara Connolly, PhD [14:25] You were nervous yeah

Dr. Mark Leeds [14:26] I put it off for a long time I was like because I was imagining like that you said that there was a so you told me ahead there’s there’s a group and we’re gonna you’re gonna 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 love talking to them they were like really ask great questions they were friendly they had great input also so yeah where’s that where did that group come from? Is that like a set group that has membership with Benzo Warrior?

Barbara Connolly, PhD [15:00] So we’ve had a Zoom group for several years, and we sort of expanded the Zooms. There’s a group that meets, well, 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 they’re more for like Q&A that’s more recently, that they’re 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, 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’ve gotten through it and all of that. There wasn’t enough of that out there four years ago, really. And so I kind of wanted to generate 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, yeah, we did. We did a whole bunch of talks and they’re on. Anybody can see them, actually. They’re on the Benzo Warrior Community YouTube channel. So they’re right there and shareable. And it’s a great series. There’s a lot of good talks in there on different subjects because, you know, there’s 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. Mark Leeds [16:37] Yeah. Yeah. Yeah. I love those lectures. I really like Dr. Mark Horowitz, how he talks about the hyperbolic taper, which is important for people to know that in most cases, you can’t just cut back in a linear way of just reducing by the same amount on a regular basis. Like, like if someone says someone’s taking Valium, like, you don’t want to just go one milligram down every week or every two weeks, because at some point, you’re going to hit a wall. 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, PhD [17:13] Yeah, but they figure it out the way you mentioned, they figure it out by running into that wall, they figure out because 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 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

Dr. Mark Leeds [17:35] Yeah yeah

Barbara Connolly, PhD [17:38] Yeah that’s that’s a great talk and he did that talk I don’t know six six 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 docs, educating doctors and patients and all about hyperbolic tapering. And he’s such a service to the community.

Dr. Mark Leeds [17:59] Oh, yeah, definitely. And 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 go faster than they think they can in the beginning.

Barbara Connolly, PhD [18:12] So true. 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, five, not five to 10, not more than 10% off of your current dose. It’s because it’s simple.

Dr. Mark Leeds [19:00] It’s simple. People, people can

Barbara Connolly, PhD [19:01] Absorb it, they can do it without making a mistake. But yes, it means that they go possibly too slow at the beginning, and too slow at the end. But hopefully, by the time that they’re there at the end, there, they’ve absorbed more, and they can actually be looking at a real hyperbolic taper and what the end looks like.

Dr. Mark Leeds [19:19] Yeah. At the end, the end is interesting because that curve never really hits the baseline. If someone were to just mathematically follow it, they would never be done. They would be down to… Well,

Barbara Connolly, PhD [19:35] Exactly. And 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. Mark Leeds [19:46] Yeah. And I’ve seen that conversation come up. How does someone decide that they’re done? I guess when that jump just seems so small that must be a scary thing for a lot of people to make that final jump and give up their medication finally.

Barbara Connolly, PhD [20:00] I think it is for a lot of people. We still go with Ashton’s philosophy on that there is sort of, you know, a point even at a hyperbolic taper where you can just jump and be okay. But yeah, there are certainly some people who will taper down, I think, lower than they need to just because of fear. And I don’t necessarily tell them not to do that. If they want it to cost them some time that way, but it makes them feel more confident about stopping, okay, that’s how it goes.

Dr. Mark Leeds [20:33] 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, that there’s a lot of similarities. And, you know, I think that we’re very clear, like when a patient starts with, for example, Suboxone at 16 milligrams, they can pretty easily get to eight, relatively easily. They can’t just jump easily from 16 to eight, but they can kind of go even one or two milligrams at a time. And then it gets harder. And then at four milligrams, it gets even harder. Below two, it gets really hard, you know, like that same curve is there. And it’s kind of intuitive with that.

Barbara Connolly, PhD [21:31] I mean, I agree with you. I’m so I’m a little unusual in that I came into this community from pain management. Because I have a, I have a underlying pain condition. And so I had worked with, I mean, I’ve worked with multiple doctors in pain management, but the last one had, get an anesthesiologist background. And yeah, some of them, the last doctor I worked with knew how to taper me well off of opioid therapy for pain. But here’s the thing. I mean, those doctors, despite the fact that 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 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. Mark Leeds [22:29] Yeah yeah it’s just 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, that it takes time. It can take a really long time. And you have to let the patient decide when they’re ready to make certain steps. 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, PhD [23:15] Mm hmm. 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. Yeah, that’s a conference. That’s a conference that needs to happen.

Dr. Mark Leeds [23:33] Oh, yeah, definitely. Yeah there actually was I don’t know if they’re still around there was a 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, you know, when people have kind of turned on pain management later on that, you know, that they, you know, I think that they started like losing their relevance, you know, 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, PhD [24:37] 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. It’s ridiculous.

Dr. Mark Leeds [25:03] 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, PhD [25:29] You know, I was thinking about that problem last night because one of the functions, not necessarily purpose, but one of the functions of Benzo Warrior, and I think some other online communities, surviving antidepressants comes to mind, or inner compass, 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 often on several other psychiatric medications also So and by the time a person finds the online communities, they are they’re likely already in some degree of trouble on this medication. That’s why. Right. They’re searching withdrawal and a withdrawal support or something like that. They’ve got some reason that they are questioning the matter. They need to come off of the med. And then you get these people talking to other people with similar experiences. Experiences, you start hearing some of the same stories over and over. Like in a benzo group, you will hear so many people who’ve 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 doctors are telling them, well, your tests are normal, you know, onto the next person or you’re fine. And the person knows they’re not fine. You know, they know they, 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. 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 causes I want to say this respectfully it causes a certain lack of credibility 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 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 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. Mark Leeds [29:22] Yeah yeah it would be great to hear like see at medical conferences to see lectures on deprescribing, which I don’t think I’ve ever seen anywhere, but to see it coming up now.

Barbara Connolly, PhD [29:35] 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. And even then, not enough of it, but it’s there. But why isn’t it more attended to in the general population? I mean, I have some answers about why that’s true that are more political economy. But yeah, 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 as much of like an art and a science as is the prescribing.

Dr. Mark Leeds [30:18] Yeah. 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. But there was times, you know, early on, like when I was still learning. I mean, we’re always learning all the time, but early on, 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, PhD [31:29] 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 invested 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. And if it were any other aspect of the economy, me, 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, 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. 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. Mark Leeds [33:03] Yeah. Yeah. It’s, yeah, it’s difficult. And there’s a lot of literature a lot to look at. And, you know, and then it, you know, sometimes, you know, you wonder like, what is this medication really going to do to the person and what side effects are likely? And, you know, some things are a lot less likely to happen. And, 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 know a lot more. We should know more in the last five years. You know, 2020 is when 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 in the literature. They don’t even know that we know now that they’re more toxic than we knew years ago when we thought they were safe to use forever.

Barbara Connolly, PhD [33:56] That’s right. Talk to Bernie Silvernail about that, you know, the research that they’ve done with the Alliance for Best Practices, and he’ll tell you, because 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, you know, BIC and the online groups that they got enough reports of adverse events in there to get that black warning to happen. It’s like a big, big accomplishment. But then does it move the needle? Not that much, actually.

Dr. Mark Leeds [34:30] Yeah I mean a

Barbara Connolly, PhD [34:31] 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’s too late they’ve already been prescribed for a long time that’s why they’re pointing to it

Dr. Mark Leeds [34:41] 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 […] 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, PhD [35:36] I think in the discussion that I work on in, 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 patient’s 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, they somehow forget that what’s 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. And that’s just kind of what the system is, right? 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. You know, maybe you go see a different professional.

Dr. Mark Leeds [37:19] That’s interesting that early on in my training, like when I was 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 where does the visit end you know what at what point are we done you know like we can do I you know I do the history of the physical exam and then I 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 and the drug companies, you know, you’re not, there’s no like, evil motivation behind it, you really want to help the person. And

Barbara Connolly, PhD [38:13] Right. And that’s the tools that you have.

Dr. Mark Leeds [38:16] Yeah, exactly. And, you know, but yeah, I mean, it would be good, I guess. And 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, PhD [38:30] Right. You know, a friend of mine has started, 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.

Dr. Mark Leeds [39:11] I think it’s brilliant. I think it’s a good model. I think every practice,

Barbara Connolly, PhD [39:14] 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. Mark Leeds [39:27] 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 a subscriber to a doctor. And they, I think in a lot of cases have more time and maybe new doctors and new nurse practitioners, like new to practice their own practice, like that they might be looking for 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, PhD [40:21] I do think that’s one model, 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. And 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 something because really there has to be some drastic change. But another thing that’s happening, honestly, that I find completely intriguing is artificial intelligence. Yeah. 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 chat GPT, 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 allopathic medicine and functional medicine. So it can offer you kind of both approaches together. And honestly, I think, 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 on fast and cheaply. 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 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 maybe the encounter takes less time that’s another it’s another way we might evolve

Dr. Mark Leeds [42:15] Oh yeah definitely

Barbara Connolly, PhD [42:17] Because, you know, I thought like these the I’m a political science by 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 a published published literature is supposed to be more accurate than that. And so like this situation where artificial intelligence can go in and can capture good advice from like really well established groups and sources and bring it together. That’s a big deal. It’s more open minded.

Dr. Mark Leeds [43:18] Yeah, definitely. I was listening to one interview with 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 really great uses for it 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 form, let them read the million pages and distill it down to what he needs out of it. And that’d be brilliant. Yeah. So if you

Barbara Connolly, PhD [43:50] Have AI do your reviewing for you too, that would be great.

Dr. Mark Leeds [43:53] Yeah. So it’s possible. I don’t know if it’s possible right now, but possible that the, you know, 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, PhD [44:09] I mean, talk to Mark about that. He needs to do that. I know he was talking about coming up with another version of the deprescribing guidelines that were that was written more with the user in mind of simplified. And I think that’s necessary. But yeah, interfacing with AI would be another way to do it. I mean, there are privacy concerns, right, that are not small. Yeah, true. Yeah.

Dr. Mark Leeds [44:38] And you can definitely do that. Yeah, with the Ashton Manual, I mean, it’s relatively short, and it’s available in a PDF, so you can actually hand that over to your favorite AI and say, you know, read this, you know, just paste it in 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? 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 that guide.

Barbara Connolly, PhD [45:13] 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 the stuff about tapering because 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 mostly good, honestly. And I’m surprised. I’m surprised by how much is there already.

Dr. Mark Leeds [45:42] Yeah. One interesting thing for people considering using AI for tapering or for anything that involves calculations, they’re not especially good at math in a lot of ways. Like it can make mistakes in math. But they’re very good at programming. So you can actually get better results by asking like Claude or ChatGPT or one of these AIs, just write me a program to do this calculation. In fact, if you ask it to write a, I know it’s Claude, it actually has like a viewer. Like if you have it write a JavaScript program, it’ll show it in the viewer. You can actually interact with it without even copying it anywhere else. So I’ll actually say, make me a mobile responsive HTML JavaScript program that does this. And I’ve actually made an Ashton calculator with it, which was 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, PhD [46:39] Oh, interesting. Yeah, I haven’t tried that. I mean, for our purposes, usually we have some spreadsheets and some simple calculators that are adequate, that are 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. Mark Leeds [46:59] 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 the high-potency benzos, like Xanax, Klonopin, maybe Ativan, that these medications themselves are causing problems for people. They’re really toxic 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. And they may even just go away completely once they get off of it.

Barbara Connolly, PhD [47:36] Yeah. You know, I was put on Klonopin in my early 30s because 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 so I was kept on for a long time, was kept on for 22 years. And 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 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 was the problem it took the whole experience of coming off and having these things come roaring back to real you know 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 so yeah there is there is toxicity I think I think what is hard is sorting out 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 think that’s really hard to figure out like which is which and how to respond appropriately.

Dr. Mark Leeds [49:24] Yeah. Yeah. It’s a difficult thing for people to realize that they’re taking poison, but they can’t give up the poison too quickly. Yeah. It’s almost like, like the situation where someone’s been in a car accident and they have like a metal rod stuck through them and, you know, the EMT show up and 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, PhD [49:46] Isn’t that right that’s a great analogy yeah I think I probably 90 of the time I’m having to tell people slow down slow down slow down because you’re right they 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 and even if you tell them to slow down they still are pushing too fast too fast 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 yeah

Dr. Mark Leeds [50:24] And you’ve probably seen that there are medications that can help along the way like with the effects of withdrawal and difficulties and tapering which is hard to deal with because everybody’s different. And I know 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. Someone might take magnesium and it’s great. Another person might have a terrible reaction to it or it may work great for a while and then a week, two weeks, months later they may have a reaction then. You just never know how a person will respond to a particular supplement or medication that’s supposed to be helping them.

Barbara Connolly, PhD [51:04] What’s your list of top things that you think are helpful?

Dr. Mark Leeds [51:09] I found for some people, clonidine is helpful. And I’m actually interested to see if, I haven’t tried it yet, Lucemyra, which is similar to clonidine, that it’s used for opioid withdrawal symptoms. And so if clonidine is helpful, Lucemyra 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. But I haven’t had the experience because it’s extremely expensive, and insurance would never cover it for an off-label use. But yeah, clonidine does help. You have to be careful because it 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, 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 more so during tapering. I don’t know about protracted withdrawal. I haven’t really seen it help people in that situation.

Barbara Connolly, PhD [52:20] More tapering. I can see that. I mean, I’ve seen that one go both ways. 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 the patient brings that up and that conversation rarely goes well so that’s part of the problem is 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 people develop really serious sensitivities. And at the extreme, maybe that’s mesoactivation. And then the, you know, the body and 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 yeah 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 now everybody else is afraid to try anything so I think it’s a real mix it’s one of the hard things about being in 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 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. Yeah.

Dr. Mark Leeds [54:20] 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 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 have you seen that can help sometimes?

Barbara Connolly, PhD [54:59] 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, some of them. But I don’t personally see a lot of the conversation, which is sort of a Facebook thing. Facebook would destroy our group if I allowed that discussion. So I just tell people to go talk about that sometimes.

Dr. Mark Leeds [55:22] Yeah, that makes sense. 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? Our 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. You know, 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, PhD [55:54] Yeah, that’s a good point. Because, you know, people ask that one all the time. What do I do about sleep? You know, and my first answer is taper in a way that you don’t lose sleep but is there you know if they already have then what that’s a really hard question

Dr. Mark Leeds [56:06] 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 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 a 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’s just that one program just seemed to be really relaxing. And this one is kind of a weird one that I don’t know if it’s real or for pseudoscience, but grounding sheets. Have you heard of those? Like sheets are blanks you can plug in.

Barbara Connolly, PhD [56:58] I have, I’ve never tried it. But, you know, 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. Mark Leeds [57:10] 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, you know, 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, PhD [57:32] Which I had 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. Mark Leeds [57:40] Yeah. Yeah. So, yeah, I don’t I don’t think it can can hurt really. So, you know, 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, PhD [57:55] Yeah, I agree. I mean, I think because I’m one of these people who’s just super, super sensitive. And so 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

Dr. Mark Leeds [58:13] You through. Yeah 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 sense and it just bothers me 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 know I guess it depends.

Barbara Connolly, PhD [58:54] 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 because it’s like it’s the more chemical sense that will cause trouble I think that we’re is probably harmless.

Dr. Mark Leeds [59:10] Yeah, that’s true. Yeah. And there are, yeah. And then there’s, you know, 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, PhD [59:34] 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 sensitivities believe me I’ve tried a bunch of them 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. Mark Leeds [1:00:03] Yes. So I’m trying to think of other, I’d say like as far as a medication that’s helpful for a lot of people, actually diazepam is a top one. You know, I kind of like, I really like the Ashton manual and I kind of feel like that she was onto something. Dr. Ashton was really onto something, maybe more so than just practicality 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’s like the old fashioned way. And now we have compounded liquids and now we can try tapering on the benzo alone. 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. And it seems to be less toxic in every way compared to the more potent ones.

Barbara Connolly, PhD [1:01:01] Isn’t that interesting? Yeah, you and I have had this conversation some. I think you’re right. I think Ashton gets a little thrown under the bus these days, and maybe inappropriately, because 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 I see that you know I see people who are helping a crossover still 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 but 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. Mark Leeds [1:01:50] Oh, yeah, definitely. Yeah. And I wonder about Librium, you know, which is, that’s what 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 not too often.

Barbara Connolly, PhD [1:02:11] Not too often. I mean, I can think of like one prominent person who tapered that way and it was, 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. Mark Leeds [1:02:25] Yeah. Yeah. Yeah. Maybe it would be helpful for a person that did the Ashton method and now, now they’re kind of stuck at a certain point of Valium and maybe Dr. Might try switching over to that or blending them together. You know, there’s all, I guess a lot of things you can try when you get stuck that, again, might be helpful and not too harmful.

Barbara Connolly, PhD [1:02:46] 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 stay put, which you can thank Mark Horowitz and to some extent Nicole Lamberson 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. Mark Leeds [1:03:20] Yeah, yeah. Well, I definitely agree that should be patient directed. If a patient is not ready to reduce their dose, that they should be allowed to hold as long as they feel comfortable doing it.

Barbara Connolly, PhD [1:03:32] 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 so I’m like we’re getting better at this we’re getting better at this but then the last I don’t know six months at least six 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 yeah and I don’t know whether that’s backlash from like the awareness efforts and doctors just being really scared at this point to prescribe this stuff longer term 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. Mark Leeds [1:04:39] Yeah, there’s definitely a 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 that you have to prescribe for a period of time two benzos at the same time.

Barbara Connolly, PhD [1:04:58] Yeah. Yeah.

Dr. Mark Leeds [1:05:00] 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, you know, 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 nine. And why haven’t you moved further along? You know, 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. I know. So

Barbara Connolly, PhD [1:05:51] It always was one of the problems of using the Ashton Minitless 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 a patient can tolerate. And the charts are just illustrative.

Dr. Mark Leeds [1:06:10] Yeah, just a guideline. It’s not meant to be that you follow that exactly as it’s written.

Barbara Connolly, PhD [1:06:16] But that’s unfortunate that a pharmacist would be. And 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 there is more of a need for education among the pharmacists, too. And 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. Mark Leeds [1:06:51] Yeah. Yeah. I see like pharmacists, they might have a problem with 40 milligrams of Valium, 40 milligrams a day daily. But they would have no problem with Xanax 4 milligrams a day, which is twice as strong. 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, PhD [1:07:13] Yeah, I know. It’s bananas. People don’t understand the conversions.

Dr. Mark Leeds [1:07:18] Yeah. Yeah, but that’s… 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 hauled 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 guys? Because I’m not really good with Facebook. So I’ve had trouble finding, are they actually PDFs? How do you find those guides?

Barbara Connolly, PhD [1:07:59] So they’re built in. If you go into the group, they’re at the top of the page. So usually people default and 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 the discussion menu, I think the guides menu is just to the right of that on a computer. So actually, it’s not that hard to find. And if anybody is struggling, just ask and we can screenshot and show exactly where. But, you know, they’re extensive. There’s really, really, really a lot of material there. I’ve not taken the time to streamline perhaps as much as should be done. So like 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. Mark Leeds [1:08:46] Okay yeah so yeah so someone goes get started that would be a good place to start you know to start looking through the guys and reading through and seeing what’s in there

Barbara Connolly, PhD [1:08:57] Yeah and I have 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 to one post that says you know read the ashton manual read the deprescribing guidelines so it’s all right there and it’s really good information I think the trouble is 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’re people are you know they’re sometimes having cognitive issues right and they actually can’t sit down and read a difficult book so that’s where you get into more people posting and asking for information that way you know because 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. Mark Leeds [1:10:07] Yeah yeah 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, PhD [1:10:19] So I have 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 feel like I only have so many hours, but I am happy to help people with tapers. 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 I can handle somebody who’s post taper, you know, and needing support too. I usually I ask people to tell me a little bit about what they need. And occasionally I won’t be the right fit. Occasionally I might sort of suggest somebody else. But if they sort of fit into the orbit of things that I can help well I’ll usually find a way to say yes

Dr. Mark Leeds [1:11:06] Yeah yeah that’s that’s really good and how would somebody find you like what I don’t know if like if they as a coach so

Barbara Connolly, PhD [1:11:16] Right now I actually ask people to just email me and tell them tell them tell me what they need just a short email […] That’s the easiest way. Or people can find me in Benzo Warrior too. I’m pretty accessible in Benzo Warrior.

Dr. Mark Leeds [1:11:35] Yeah, definitely. So yeah, that’s really, really good. And I was thinking that, you know, when we’re talking about guys, you know, getting back to AI, like I always like right away think of that, like, you know, of training like a chat bot to, and they’re not always easy to train you know that 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, PhD [1:12:16] 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 it’s always like an ongoing project because people get better and they move on. And if it would be brilliant, it’s actually more automated.

Dr. Mark Leeds [1:12:29] I think there’s

Barbara Connolly, PhD [1:12:32] A Reddit community 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 to some degree.

Dr. Mark Leeds [1:12:48] Yeah, that’s true. I guess in some places you can have a chat I know on Discord, you can have that, like you can have an AI chatbot as part of the group talking to people.

Barbara Connolly, PhD [1:12:59] Yeah, I mean, I know there are better ways to do this. And someday Benzo Warrior would 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. Mark Leeds [1:13:22] Yeah, I know that I’ve seen that you have to talk in code to be careful not to get caught by Facebook with the… Exactly right.

Barbara Connolly, PhD [1:13:30] 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 happens. So, yeah, that’s annoying. But it is what it is and we learn to live with it.

Dr. Mark Leeds [1:13:49] Yeah, definitely. So, Dr. Barbara Connolly, thank you again. Thank you for joining me today.