Laura Delano: Overcoming Iatrogenic Injury With The Inner Compass Initiative

Dr. Mark Leeds [00:00] Laura Delano, welcome to the podcast.

Laura Delano [00:03] Thanks, Mark. It’s really good to be here.

Dr. Mark Leeds [00:05] So you’re currently working on the Inner Compass Initiative, and I was just looking at the website. It looks incredibly interesting, especially what you’re working on with psych drug withdrawal, tapering and withdrawal, which I don’t think a lot of people really know what that’s about, other people, other than people who are involved in it. And when someone takes the medication, like say someone goes to the psychiatrist and says, I’ve been feeling sad for a long time. They say, when you go to a surgeon, you’re going to get cut. Surgeons do surgery, psychiatrists prescribe psych drugs. So you go to a psychiatrist and you say, I’m really anxious, I’m depressed, I’m not feeling myself. And they’re like, well, there’s Prozac, Paxil, Zoloft, Lexapro, here’s Paxil, 10 milligrams, take that every day for the rest of your life. And then they probably don’t say it that way but along the way at some point you feel like you’re done with it or you don’t want to take it anymore and you stop taking it suddenly and now the person probably gets very sick from withdrawal and they have no idea what happened and they go back to the psychiatrist who says well the problem is you stopped your Paxil get back on it so and then you know you might look up on your own like well what would be a lower dose and you’re well 10 milligrams is the lowest dose there is and I don’t know if they’re capsules or tablets but there’s not really you know maybe I don’t know 10 15 20 years ago no one would have any idea what to do and you go to the psychiatrist and say I demand you taper me and like well well no I wouldn’t even know how to do that there’s nothing lower than 10. I mean maybe there’s a five or pediatric liquid or something but like what’s the next step like today now we have more information? Like what’s involved in that?

Laura Delano [01:49] It’s a great question. And I think the first step of coming off a medication has nothing to do with the actual reduction of the dose. It has to do with getting really, really informed about first and foremost, what the drug you’re taking is, You know, what we do know about it, what we don’t, how it acts on your central nervous system. And of course, depending on what drug class it is, it might act primarily on your serotonergic system or your data system. It’s obviously way more complicated than than what we even understand. But I think the first step is really educating yourself about what the drug is that you’re taking and how it’s affecting your body. Because once you learn about how the human body is basically primed to compensate for the ongoing presence of a psychoactive chemical, which a psychiatric drug is, then it becomes common sense and basic biochemical law that you are going to want to be really careful about how you come off it. And, you know, I didn’t know any of this, I should say, when I was on five different psych meds back in 2010, which was my final year on them. I had no idea about this phenomenon, which is called physical drug dependence. I had no idea that tapering slowly was important. I just wanted to get these drugs out of my system as fast as possible. So all the information I’m talking about here, I only learned after the fact. And, yeah, so if someone’s in this position, they learn about the drug they’re on, and then basically they seek out all the information that’s freely available in the layperson withdrawal community online. And just, you know, a plug for Inner Compass Initiative’s Withdrawal Project, we created this massive comprehensive hub at withdrawal.theinnercompass.org where everything is freely available specifically so that a person in this exact situation you’re talking about can basically show up on our website and work through our companion guide to psych drug withdrawal step by step. And this will help them educate themselves about the drug, help them think through the beliefs they have about this drug, because if they’re taking this drug thinking they have a chemical imbalance that this drug is fixing, that’s obviously going to shape their emotional relationship to the meds. So we help people rethink all of that, assess their overall well-being, their nutrition, you know, the stressors in their lives, their support system, their relationship to their prescriber, because all of this preparation work is the first step of the withdrawal journey. It is not about just starting to get the drug out of your system. And so once a person’s really meaningfully prepared and informed, then we help people teach themselves about what slow tapering actually looks like in the lay person withdrawal community because you might find a doctor who says sure I’ll taper you we have to do it slowly so we’re gonna cut the dose in half for a week and then stop it altogether or maybe they do it over a few months it sounds slow especially when you want to get off this drug but it but it actually isn’t and the you know the as you talked about what happens when you come off a med too quickly. You know, these, this horrible cascade of withdrawal symptoms is for some people ends up being disabling for years. So how can we help people avoid that altogether? It is by first teaching themselves what slow tapering looks like. And, you know, the rough ballpark that people generally find sustainable for a taper rate is about five to 10% per month based on whatever your dose was the previous month. So the amount you’re cutting each month is gradually getting smaller as your overall dose is getting smaller, which might mean for people who’ve been on these drugs for a long time, they might have to taper over potentially a few years. For some people, it’s faster. For some, they can handle it, but a lot of people can’t. And there’s no way to know upfront if it’ll be hard or easy for you. So the harm reduction approach is to really start slow and see how it goes. And then slowly over time, you can try to push how much you’re cutting, but often that just doesn’t work for people. So it’s just, it’s a conundrum because a lot of people on psych meds feel cognitively dulled. They can’t think clearly. It’s hard to read and it’s hard to absorb information. And yet in order to be really informed about all this, you have to read a lot. There’s dense pharmacological information you have to teach yourself. There’s a lot of information you have to teach yourself. So it can feel kind of overwhelming. But our nonprofit’s purpose is to help people as much as possible by organizing the information in an intuitive way, in an accessible way, and then also providing community support from other people who’ve been through it in our community spaces.

Dr. Mark Leeds [07:20] And you also, I think I was reading that you, yes, you help people make connections with other people going through the same thing, and maybe even in their local community. Is that really helpful? And I’ve had patients ask me about that, like, can we have group meetings? Can we get together with all the patients going through this and talk? And I sometimes worry, like, what if what if one person kind of triggers another person to feel bad or to, you know, to feel worse or something? Or, you know, how do you maintain that kind of communication and keep it helpful to everybody and beneficial? You know, it seems like a complicated thing because everybody is in a different place and some people are worse off than others with their withdrawal symptoms. So how have you figured out how to get groups together or get individuals together and to communicate together and to help each other and support each other?

Laura Delano [08:16] So in the context of like one-on-one connections between people in their own private lives, we basically, for the very reason you said, we basically made the decision as a nonprofit to say, you know, when we launched, we’re launching this networking platform so that you can find other individuals near you, like, so you can search. I want to find people within five miles of me who have been off of their meds for more than two years and who were on Prozac. You know, we can, we create this platform we created actually allows people to filter search at that very specific level. And, but we said outright, you know, we can’t vet, we can’t vet each person in here. So it’s really up to you as an individual to be responsible for the connections you make. And so our connect platform, it’s called, which, which is on, we have one at the inner compass initiative website, theinnercompass.org and another at the withdrawal project website. We, it starts out, it’s anonymous at the outset. So you can reach out to someone, but they don’t, they, if someone reaches out to you, they don’t automatically see who you are. So because at the end of the day, yeah, we can’t, we can’t oversee that. And we, and we shouldn’t, you know, I think it’s so much of becoming a psychiatric patient is about being taught that you shouldn’t be responsible for yourself because you’re sick and that you should have your doctors taking care of you and making decisions for you and all that. And we do, I think it’s important that people kind of take back that personal responsibility, which brings with it risks. So with our connecting platform where individuals can privately connect with one another, like we have no idea who’s connecting with who we don’t, we don’t follow that information. We don’t want to own that information. We just leave it up to people in terms of the community we’re actually overseeing online. We do have very, very clear, strong guidelines and values and what we call our group pledge that any new member has to sign on to so that we can create a really supportive and respectful nuanced and safe space and not safety in the typical sense of like, oh, we don’t want anyone to kill themselves, but more, you know, safety around like the information that’s being shared about coming off. So in our online community, one which we have on Facebook called Inner Compass Conversations, and then in a new community that we’re actually going to be launching on October 1st of 2022, just a few weeks from now, we basically say like, you can’t actually provide direct advice to other people or ask for direct advice from other people. What the way we ask people and the way we require people to participate in the community is to keep it about their own experiences. So let’s say I’m someone, I’m trying to come off a nasty Benzo. I’m having a rough time. I’m having horrible, you know, like burning pain in my hands. We basically the culture we’ve created in our community is would we have it so that I would say, Hey, everyone, this is what’s happening for me. Has anyone else been through this? If so, like what helped you? What didn’t help you? Instead of saying, yeah, everyone, this is what’s happening for me. Tell me what to do. So we’re really intentional about this idea of mutual support, people owning their own experiences, sharing about their own experiences, not pretending to have answers for others. But it’s, it is danger. I mean, this is, there’s a lot of risk to all of this. And I know many people who have killed themselves and that’s just the horrible reality of all of this because we’re in the dark ages about how to safely come off. So it’s messy it’s always going to be messy and we just we for us it’s about the mutual respect and patience and compassion and not telling people what to do or asking other people to tell them each other what to do

Dr. Mark Leeds [12:48] Yeah yeah and the tapering off of these medications is difficult And it’s important for people to know, and I’ve said this before, and it’s been said before a lot, but it’s important to point out that people coming off of a lot of these psych drugs, including benzodiazepines, that this isn’t an addiction issue. That when someone cuts back on their psych drugs and they start having withdrawal symptoms, it in no way means that they were addicted to those medications. Even though some of them, you know, the benzos are controlled medications and believed to have abuse potential. And maybe they do have, in some sense, you know, like Xanax is out being sold on the streets with cocaine and stuff like that. But really, the drug itself is not very addictive. And people who take their medication for years and years, exactly as their psychiatrist or family doctor told them to, and they suddenly get sick when they try to stop it, they are not and never were addicted.

Laura Delano [13:49] Yep. It’s such an important clarification. I really appreciate you making that because I think a lot of people in who are doctors and other medical and mental health professionals do just conflate addiction and physical drug dependence as though it’s not a big deal. Or when you try to explain to them, they’re like, yeah, whatever. It’s just words. It doesn’t really matter. And it really does. As, as you say, I mean, some of these drugs that are called anti-anxiety medications or like anti-ADHD medications, all quote unquote, they can and are quote unquote abused by people. But as you said, that’s happening in not in a psychiatric medical context. It’s happening out on the street in people’s social lives. Those of us who have been good patients, who’ve taken our meds as prescribed, who’ve been told these are medicines that are treating, quote unquote, an illness. Yeah, we’re not addicts. We’re not having cravings and compulsions. We’re literally doing what our doctors told us. And, you know, sure, the people who are, quote unquote, addicted outside of the patient context, they also need safe tapering information. But I think when people conflate these two different populations, it does a disservice to those of us who were literally doing just what our doctors told us. It kind of puts the onus on us and has this like moral, you know, the sense of like moral judgment. And not that people who are so-called addicts should be morally judged. I certainly don’t think that. But yeah, it just complicates it. And it’s, and language is so important to get right.

Dr. Mark Leeds [15:33] And that’s a good point. I mean, even people who are or have been addicted to drugs or medications, they shouldn’t be treated with moral judgment either. And that’s I mean, there’s really the whole addiction treatment system and the rehab community or the rehab industry is really a broken system. And that’s one reason I bring it up is because of how it relates to what you’re doing, that you may find yourself in competition with every rehab in the world saying we can treat everything, we can fix anything. You have benzo dependence, we can fix that, we can taper you quickly. You know, whatever you go to them, they’re like, oh, we’ll add that to our website for the laundry list of the millions of things you do. And so people go there thinking they’re going to be taken care of and they’re like well we have a four four week program because all we do are four week programs and we’ll have you off of whatever you’re on in four weeks which is going to have and then they kick you out and say you graduated and you’re done but that’s going to have terrible consequences tapering somebody that quickly just because that’s how they do it oh

Laura Delano [16:39] It’s so true I’m so glad you’re bringing this up mark because I share the same concern. I mean, the there’s, we could have a whole conversation about the problem, at least what, in my opinion is the problematic medicalizing of addiction, like this, just as so-called psychiatric diagnosed, you know, illnesses are medicalized. So too is addiction, like it’s a disease in your brain, it’s incurable, you can manage it and find recovery, blah, blah, blah. But I mean, there’s, I think there are fundamental problems with the entire paradigm, but yeah, definitely in the actual, the rehab treatment industry within the addiction context, they are totally just sweeping up different psych drug classes now, as though it’s as simple as like getting someone clean from heroin. And mind you, I have many friends. I spent a long time in the 12 step world many years ago when I, when I quit drinking. And a lot of people I know who, you know, were literally like self-identified heroin addicts who also had been on psych drugs at some point said, I would take, I would take heroin withdrawal any day of the week over coming off of my antidepressant because I don’t, I just, maybe it’s a synthetic nature of these psych drugs. I don’t know what it is, but you know, most people with heroin, they have like horrible, you know, they’re vomiting, they’re cold sweats. They’re like losing their mind for a couple of weeks. And sure, maybe they have like lasting kind of feel a little bit like deer in headlights for a while, but it’s nothing compared to trying to get off of Paxil. And yet the addiction industry doesn’t distinguish between the two. And because they, like you said, they ship people out after a few weeks and they’re like, good luck with your life. They’re not seeing the damage that they’re causing. And then these poor people are going back to their lives baffled by why they feel like they’re about to die. And of course, the second they seek out help, they’re just going to be told, well, why would you come off of your medication? You’re mentally ill. You wouldn’t stop your insulin if you’re diabetic. And so then they just get right back onto the hamster wheel. And there’s a lot of money to make on psych drug withdrawal. And that’s a big reason why we started this nonprofit, because I believe it’s a human right to have free access to safe information about how to bring yourself off a psychiatric drug. And you’re definitely seeing a lot of facilities and practitioners and supplements and other products to help people come off psych drugs that, you know, stand to make a lot of people a lot of money. And we want to serve as a counterpoint to that’s not to say we don’t need good people good practitioners doing this work like you we do but the industry there’s a huge industry burgeoning and it’s very concerning to me

Dr. Mark Leeds [19:36] Yeah yeah it seems like we could use more very good compounding pharmacists to say here’s the drug we want to taper off but we want to do it five percent per month calculate that out and prepare for it and you know give it to the patient and I know what I actually know one like that here in Miami. And he can’t do everything, but he can do a lot. And you can give him the medication and the plan and he can implement the plan. You know, like, I don’t have to go to him and say, this month, we’re going to do 2.739 milligrams. And next month, we’re going to do 1.23, well, you know, whatever it is, like, he’ll actually work that out. And I think that’s what we need. You know, these pharmacists, they know math, they know how to calculate drugs. That’s what they went to school for four years. They didn’t go to push pills at Walgreens. And we need a lot more of them that know what they’re doing with that and can help us.

Laura Delano [20:26] Oh, I totally agree. And I love that you have a personal contact who you trust, because one of the challenges with compounding pharmacies in general is that they’re very poorly regulated. And so a lot of people get really harmed because the, you know, these pharmacists, when it isn’t a good, a good compounding pharmacist, like, like who, you know, you know, they’re not giving accurate amounts of active drug or they’re just doing sketchy things. And so we, I don’t, I, we do need a whole arsenal of like really trusted, trustworthy, smart pharmacists who have compounding abilities. And, I mean, that would, that’s all we need because we don’t need psychiatrists. Like really, I mean, we need people to write the prescriptions, but the expertise, there’s no, on the, on the whole psychiatrists have zero expertise on proper tapering protocols. So it’s up to the few like yourself who are, who are informed. And then those of us patients and ex-patients who’ve done it ourselves and then really, really well-informed, smart compounding pharmacists. That’s all we really need.

Dr. Mark Leeds [21:36] Yeah. Yeah. It’s incredible what would come up against it and not having access to that. For example, I had a patient that wanted to come off of a particular medication and well, I’ll just say, and we had talked about it before, it’s Lyrica. So I went to this pharmacist and he said, I’d be happy to do the tapering plan, you know, to make the liquid suspension and everything. The problem is I don’t have access to that medication. I can’t order it right now. He said, I can work on it, but that may be months from now, it may not work out. So I said, you’re better off trying a different compounding pharmacy. So yeah, so I thought he, and he recommended, he was very good. He recommended, he said, find one that prescribes medication like a regular pharmacy so they’ll have the medication and stuff because oh I asked him first I said can the patient just bring in their medication and you’ll turn it into the liquid suspension he said we can’t do that we’re not allowed to take in other patients medication we have to order order ourselves so he said go to a compound pharmacy where they can compound and they’re good at that but they can also dispense regular medications and they’ll be able to have access to it so I tried that I called a very reputable local compound pharmacy. And I said, well, you have Lyrica and stuff because you also dispense it and we need a liquid suspension. And weeks went by, they never talked to the patient. And then finally I called them and they said, we didn’t do it because it’s already available on the market. And I think we had asked for one milligram per milliliter, which was going to be a large volume of liquid, but it would allow very easy, gradual taper. Was it yeah I think one milligram per milliliter but it would have made it so the patient could use like a big syringe and very easily see as she’s tapering down through the percentages of a milligram or whatever but it turned out so that the pharmacy said we can’t make it because it’s already on the market there’s already a liquid suspension of Lyrica and I looked it up and it’s 20 milligrams per milliliter yeah which is a lot more than one milligram per milliliter so I talked to the patient and she’s like well how can we work with that how am I possibly going to measure that well like I guess we’re going to use a little tiny

Laura Delano [23:45] Insulin syringe

Dr. Mark Leeds [23:46] And figure it out but it really would have been nice if we could have had it made the way we wanted it but you know and then oh that’s the funny thing the next thing is we went to we ended up at Walgreens and they the Walgreens refused to fill the prescription initially because we I put tapering instructions in it. And they really so that I had to, yeah, I had to rewrite the prescription as if she’s going to take it consistently, like 20 milligrams a day, indefinitely. And they filled it then. Yeah, it was crazy.

Laura Delano [24:22] Yeah, well, and this to me speaks to how like, this might be that something that you as a doctor, aren’t ethically able to say, but as me as a lay person, I can, you know, this speaks to the importance of people, just ordinary non-medical people, educating themselves about basically have making their own liquids at home, which in most circumstances, putting aside the hygiene issue, you know, of course the main, the main factor for most of, you know, most of these drugs that aren’t modified release. The main safety issue is if you’re not doing it properly and it gets contaminated. So as long as you’re doing it in a sterile way, the vast majority of these drugs, the exceptions being drugs that are in modified release form. So beaded capsules or a tablet that has a modified release technology. Most of the time people can and do make their own liquid, literally putting a tablet into a specific amount of water or milk or suspension, like suspending liquid, crushing, maybe they crush it first, maybe they don’t, pouring powder from a capsule. I mean, this is what so many people are left with no choice but to do because of situations like this. And in an ideal world, powder, just pure powder form of all these drugs is easily available to people. But because of all these obstacles, like the ones you’re describing, which are so ridiculous. People end up feeling stuck, or they end up having to literally basically become their own pharmacists, which of course, probably sounds pretty scary to a lot of people out there to think about making their own liquid. And we do actually provide that information at the withdrawal project in very, you know, step by step detail, not in a not not in a prescriptive way, like and that’s, that’s the dividing line between, you know, why our website, why we’re not getting sued because we’re not prescriptively saying do this and then do this and do this. What we’re saying is this is what some people do here and here and here. So we show pictures, we have step-by-step information, but it’s told in a journalistic tone, like people generally do this and this and this. It’s not you should do this and this and this. And that’s the irony, like it’s much safer for me as a lay person to provide that information because I can’t be accused of medical malpractice because I’m not a licensed professional and I’m not going to be confused as one. And I don’t have a prescription pad. It’s like, ironically, people like you who are these important licensed professionals who sometimes are in more risky situations because you do have your medical liability to worry about, which is horrible that, you know, you’re so many doctors are trapped by the standard of care being prescribed these drugs all the time indefinitely. And then when someone, when a doctor wants to help someone come off and they’re so called out of the standard of care and they can get sued and that’s horrible and that needs to change.

Dr. Mark Leeds [27:30] Yeah. And that’s, I mean, another scary thing. I mean, you know, we talked about the, rehab industry and there seems to be pressure from them against various things, but also the pressure of the huge multi-billion dollar pharmaceutical industry. And it almost seems like that’s our enemy when it comes to helping people get off of medication because their intention is not for people to ever get off of medication. Medications are designed to not be suitable for tapering. And we see it in addiction treatment also. That’s a major thing that people that take suboxone or buprenorphine, which is a drug in suboxone, clearly was not designed for tapering. It comes in generally eight milligrams and two milligrams. And two milligrams is much too high of a dose for someone to stop at. And it says in the instructions from the manufacturer, do not cut or tear or break the medication. And they explicitly tell us, you know, we don’t want you to take lower than two milligrams. And so, yeah, there’s these, and it’s true of all of them. You know, like we just, we said before, Paxil, 10 milligrams, you know, whatever the lowest strength is, it’s usually far too high for some to stop at. They don’t have the in-between doses. And when, you know, when you talk about liability and people are afraid of being sued, you know, you imagine that there’s some big powerful lawyers and lobbyists in the pharmaceutical industry that are probably out there saying, you know, let’s crush this little movement of tapering because we don’t, tapering is not in our best interest.

Laura Delano [29:01] Yep. Oh, it’s so true. It’s so true. And just the, I mean, the, like, like you said, the, how they’ve created the med, the maintenance med industry within the addiction industry, and now how they’re creating drugs to treat the adverse effects of other psych drugs, like tardive dyskinesia drugs and oh my gosh, restless leg syndrome drugs. Like there’s so, not only are they putting road, so many roadblocks up to helping people get off a singular drug, but they’re literally just like trick, tricking people into thinking if you’re having a hard time on drug X, don’t not only stay on it, but take more now also, like it’s just, and so there does need to be at the, I mean, change needs to happen at so many levels. The level I tend to spend most of my time working on is just within the mind of the individual citizen, like helping them step back, think critically, ask questions, reframe how they’re making sense of things, realizing how much more power they have than they realize. But we need lawyers and people who are able to infiltrate the lobbying industry or somehow, I don’t know, somehow put a stop to it, ideally, which maybe is impossible, but there have, the laws have to change. People have to go to prison. I mean, the fact that it’s just, it’s the cost of doing business for a pharmaceutical company to pay a $3 billion fine, like no one’s going to prison, even though they are literally being found guilty of criminal offenses. I mean, this has to change. And I don’t, it’s a big beast to think about, but it has to happen. It has to happen.

Dr. Mark Leeds [30:45] Yeah. Yeah. And I mean, and it has, and we saw how it happened to play out in the opioid industry that, you know, we’ve known for at least two decades that Purdue had their hands in everything with opioid, opioid treatment, you know, pain management that their influences were everywhere. I mean, they were behind the educational system that taught doctors. I mean, I sat in lectures where doctors would trusted, well-respected doctors We get up and lecture and tell us how it’s okay to prescribe opioids for pain in almost any situation. And that I remember a doctor saying OxyContin 20 milligrams for shoulder pain. You know, that’s how he was treated and it worked fine and he stopped taking it. Yeah, it’s crazy. And then I’ll go to the same convention put on by the same people. And you think that never happened. You know, you almost feel like it’s like gaslighting of doctors. Like, well, that never happened. We actually want you to not prescribe opioids ever again. And you’re going to be I mean, there’s there is an article in CNN from 2001 about how doctors will be disciplined for under treating pain. And now, like 20 years later, the same CNN is putting out articles. Doctors will be disciplined for treating pain at all. But just generally, just that kind of gaslighting of everybody like we never said that. And you know but they’re definitely it are powerful forces behind these companies you know pushing these you know pills and the commercials are crazy you know […]

Laura Delano [32:27] Like yeah oh my god yeah anytime I’ve had like a friend from Europe visit and they say I mean we don’t we haven’t had tv in a long time too but like when I have had talked with friends from Europe they are just shocked at the direct and consumer advertising and what you’re saying is so true about how big and far the tentacles of the industry influence go and I mean for me what’s the at the most insidious level of it all is just how they how they created this story that not only is pain bad to feel but that like people who are in pain that it’s like a justice like you are being your rights are being violated if quick relief of your pain is not made on offer. So when you think about just the, whether it’s in the physical pain world or in the mental, emotional pain world, how so many of us and myself included, I mean, I was as a very competitive athlete growing up, like I had chronic injuries and I remember being proud, like literally Mark, just listen to how ridiculous this is. I was in fourth grade. I tore some ligaments in my knee playing tennis and my orthopedic surgeon prescribed, I didn’t have surgery, but my orthopedic surgeon prescribed me like eight Advil a day for like at least a year. I was just, and I remember being proud like this app. Sure. It wasn’t an opiate, thank God, but you know, this pill symbolizes how much pain I’m in and this quest to solve it. And like, I’m so what a fighter I am for pushing through. And the same thing with, you know, when I ended up on psych drugs, like I just believed that the only way my pain would be validated was with, was with, was if I was taking pills to treat it. And that as long as I had pain, there was something fundamentally wrong and it wasn’t okay. And I think that for me has been the most liberating, like in my decade plus, I guess, 12 years at this point of being an ex-psych patient. It’s, it hasn’t been in the healing, like, yes, the healing from the meds, which took many years has been profound, but it’s really been in this deeper way of realizing, like I was tricked into thinking that pain is bad. Like, and now I don’t have to be afraid of pain anymore. And I don’t have to try to get rid of it. And it’s just so liberating. And then you see how consumerist culture has us hooked and all not just with pills and doctors but you know food and sex and clothing and cars and whatever product it is like if you’re uncomfortable do something to feel better and it goes so deep holy cow

Dr. Mark Leeds [35:24] Yeah yeah definitely so somewhat imagine someone who has just gone through, who’s gone through this process and maybe they were, they were, they were tapered improperly or too quickly. And maybe they were on a benzo or other psych drug. And now they’re suffering like the worst imaginable withdrawal symptoms. They, maybe they have akathisia, they have the motion disorder where they just can’t stop moving. They’re just pacing the floors and they can’t sleep. You know, they have crushing headaches, histamine allergy symptoms out of the blue, like they react to every little thing. They can’t take any supplements, medication, anything makes them sick. And they feel like they can’t go another, another day, you know, with that, this is just the end of their life. And then someone comes along and says, well, you’ll get past it. I went through it lasted me three years and I’m fine now. And now this person has just started it. Like, how do you give someone hope that it seems like they’re in a hopeless situation?

Laura Delano [36:26] Oh, another good question. I mean, I think the first thing is I do always start by saying how far from alone the person is because like literally the exact situation you just described, like right now I am actively in touch with at least two dozen people who are, who are like every single thing you just described, they’re in it. And I, and just over the years, just hundreds, if not thousands of other people who’ve been there. So I always start by saying, you know, this is such an isolating and terrifying experience. And just start by knowing how far from alone you are in this. And then I think a lot of it is about our relationship to the present moment, to as much as possible, keeping it in the now and not playing out like, oh my god so and so said it took her three years does that mean that’s going to be three years for me as much as possible staying in the moment which then means basically what I what I will usually say to people is it’s about two things first it’s about cultivating a practice of being with what you’re in a more sustainable way so that you feel more in control and powerful in the midst of what otherwise feels like a completely controlling, disempowering experience. So finding ways to be with it and then finding really reliable and ideally like non-harmful ways to distract from it when you can’t be with it anymore. So for me, that was my go-to distractions in the worst parts of withdrawal were like, unfortunately the biggest one for a long time was television. And I knew like, this is obviously not good for my sleep hygiene or for my, you know, my, and my brain waves and all that, but it’s what it’s, what it’s going to take to keep me here. So I watched a lot of TV for a while. And then I turned to like needle pointing and Sudoku and just like things to keep myself occupied. I started to, when I, at the time I was really involved in the 12 step world. So I was being of service to other people to get out of my head to forget myself for a little bit. I just developed these go-to ways to distract from the present moment. And then with time, I just started to practice this idea that I could be in what feel, what felt like overwhelming agony and be okay in it. Like my mind could be telling me the most fucked up, paranoid, crazy, twisted stuff. As I’m walking around the supermarket right now, like the lights could be complete, like the fluorescent lights could be flipping me out. I’m overstimulated. I’m like trapped in a body that’s seven pounds, 70 pounds bigger than I meant to be, which was my reality in early withdrawal. And you know what? I’m putting one foot in front of the next and I’m like staying with this. And it’s so easy. Please don’t, no one listening should take that to me. No, I just did that. And it was easy. It was not, it was years of practicing and practicing this, but that to me is where the real power lies to realize that you can have your skin, like the energy pulsing under your skin. So freaking intense that you want to rip your skin off and you can move through it. You have the power. No one can take that power from you. So I think it’s a combination of helping people feel connected to others who are in it, staying in the present moment as much as possible and not playing out the long term because that is immobilizing and hopelessness inducing. And then yeah developing these practices of being with and distracting and then just day by day week by week month by month year by year it all shifts and then you find yourself looking back down the road saying like holy shit I can’t believe that chapter of my life back then when I was in withdrawal it almost feels like a distant dream

Dr. Mark Leeds [40:41] Yeah yeah and it is kind of I mean I guess there are some similarities with the traditional 12-step recovery as far as like you know people talk about having their toolbox of things that they have to use to help them and everybody has their own tools they’ve discovered and I guess when people can get together and share them you know people learn about tools that work for somebody else and you know you get new ideas you know like like just for example I was you know I had never heard of this until a while back of controlled aggression for treating akathisia. And it just seemed like a funny thing. And people laugh at that when they hear it’s like, get a punching bag, you know, hit the punching bag, or, you know, hit your pillow or scream into your pillow. And, you know, the one woman, when I mentioned the punching bag thing, she’s like, Oh, can I, can I punch my husband? Can I just pretend it’s my husband? But yeah, there’s, and, you know, and I might not have come across that unless I had seen it on whatever website. And, you know, so maybe, and there’s a million tools out there and some things will work for some people and they won’t work for others but the more you learn about the more you can try things and discover what works for an individual what works for you

Laura Delano [41:53] Yep it’s totally true and one thing to throw in also that’s been so profoundly impactful on me is when you there’s there is nothing like intense mental or emotional or physical pain to convince you that like what you’re in is permanent. I mean, it has such a, it has such a force about it just convinces you, this is all you’re ever going to know. This is your reality. Every second of the day is this. But when you think about how in any given moment, even if, even if it’s for 30 seconds, like your mind has the ability to forget that. Like maybe, maybe you’re in the car driving somewhere and you just spent three straight hours completely debilitated by whatever symptom it is you’re in and you’re in the car and suddenly a song comes on and you think about it reminds you of you know a really nice memory from summer camp when you were 10 and then the next thing you know you realize a minute has passed and I haven’t even thought about my akathisia. And like, it’s in realizing how impermanent a state of feeling so trapped in your pain, it actually is. And once you see that for yourself, even if it is these tiny little windows, it’s not doesn’t have to be six straight hours of feeling like you’re in some Zen state, it literally could be a 30 second period of time where you forgot or you were distracted from, like, you know, looking in the face of your infant child or petting a dog on the sidewalk and you love dogs. Like we always have the power and ability to forget, to shift out of, to turn our attention elsewhere. That never is taken from us. And that you are tricked into thinking it is when you’re in it, but then you realize there are always in a given day moments of getting out of it. And I think that’s, I guess you could say that’s one of the tools in the toolkit, but it’s, you know, something

Dr. Mark Leeds [44:00] That’s like, yeah, it’s like the thing of taking an inventory throughout the day of like writing down, you know, the times you feel good or the times that something good happened. And then you can look back and say, well, I actually didn’t have 24 hours of pain and suffering, but there were some good times in there.

Laura Delano [44:16] Totally. And that’s where family members or people in your support system can also be really helpful because they are going to see a lot of the positive shifts and the, and the moments of reprieve that you might forget or not remember. Yeah. Not, not be actively in touch with. So if you have people in your life who can help remind you of that, or be like, you know, you did actually laugh this morning, remember, or like, you know, that’s, that’s always a useful role that a support system can play too.

Dr. Mark Leeds [44:45] Yeah. And did, do you have any, any kind of services right now? Are you planning anything for family support because family support is very important you know family members understanding what their family member is going through is there any any plan for that helping with the family

Laura Delano [45:03] Yeah we actually in our new in this new platform we’re launching which I don’t even know if I said what it’s called but it’s called inner compass exchange and it’s hosted on mighty networks which is an alternative to facebook we have already a family circle in there with a couple of leaders, family member leaders in the community. And there’s a regular support call. There’s like a private little kind of online group where family members can support one another and exchange ideas and all of that. And we are planning to yeah to grow that hopefully and have it be as self-led as possible because I do I think family members leading each other and supporting each other is so important and you know a lot of our information about withdrawal and tapering we wrote so that it’s useful for family as well to educate themselves and get informed because I think that’s always the first step for anyone involved in this withdrawal story it’s get informed first but yeah that’s that’s an it’s such an important group of people who are so under met and we definitely want to really support them and help them get the support they need as supporters because supporters need support too oh

Dr. Mark Leeds [46:29] Yeah definitely yeah it’s not easy it’s not easy supporting someone through protracted withdraw. But also it’s important that they realize, you know, first, this is not addiction. This is, this is real what they’re going through. This is probably worse than anything you can imagine. And more than anything, they need your support. Family members need to be aware of that.

Laura Delano [46:52] Yep. Yeah. And I would say too, as much as a family member is able to disengage from any like pre-set story about what, like what it means that your adult child is lying on the sofa for eight hours every day. Like it doesn’t mean they’re a quote unquote failure or they’re like behind in life or they’re lazy or they’re not trying hard enough. I think just the experience of enduring psychiatric drug withdrawal is so unspeakable on so many levels. And just to like, let go as much as possible of preconceived notions about what any one behavior, means and to just trust in your trust in your loved one, trust in your loved one’s body and its capacity to heal, trust that your loved one does not want to be in this and they are doing the best they are, they can with what they have to survive it. And just trust that this is not forever. Because it isn’t. And then when you can’t handle it anymore, that’s when having a network of other family members who’ve been through it before you becomes so key because you can vent, you can cry, you can talk about how worried and terrified you are and just have others who’ve been where you’ve been to be by your side and keep you going.

Dr. Mark Leeds [48:16] Yeah, definitely. Laura Delano, thank you for joining me and thank you for all the work you’re doing with the Inner Compass Initiative.

Laura Delano [48:24] Oh, thanks so much, Mark. Thanks for all that you’re doing too. And I hope we have a chance to talk again because you are a really important part of this whole story and we need to have more doctors like you who are getting the word out, doing this important work of tapering. So I’m honored to be here and really appreciative for all you do.