084: Nicole Lamberson, Co-founder Of The Withdrawal Project & Rep Of Benzodiazepine Information Coalition (BIC): What You Need To Know About Benzos For Sleep + Info On This MUST-KNOW Benzodiazepine Nonprofit!

Welcome to the Sleep is a Skilled podcast. My name is Mollie McGlocklin, and I own a company that optimizes sleep through technology, accountability and behavioral change. Each week I'll be interviewing world class experts, ranging from doctors, innovators, and thought leaders to give actionable tips and strategies that you can implement to become a more skillful sleeper.

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Let's jump into your dose of practical sleep training.

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Welcome to the Sleep is a Skilled podcast. Today we are actually speaking with a representative from the Benzodiazepine Information Coalition, and in this conversation this is pretty important because we do know that many people are currently taking benzodiazepines to support their sleep. Considering taking benzodiazepines to support their sleep.

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And previously we were joined by Dr. Anna Lemke, a really renowned expert in this area around many things that relate to addiction in general, but certainly, uh, helping to sound the alarm on what she's calling the hidden epidemic of benzodiazepine use. So I'm really excited to go deeper with the Benzodiazepine Information Coalition to provide more resources for people that are either struggling with their use of benzodiazepines or wanna just get more information or wanna be educated on the this class of drugs.

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So our representative here is Nicole Lambertson and Nicole is a physician assistant residing in Virginia. She obtained a BS at James Madison University in 2000, and then went on to complete the Master of Physician Assistant Program at Eastern Virginia Medical School in 2004. She practiced in an urgent care and occupational medicine setting until severe illness from Benzodiazepine withdrawal syndrome left her unable to work.

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In 2005, she was prescribed Xanax for a work related stress. Over the course of five years, she developed many classic symptoms of benzodiazepine tolerance withdrawal. Which multiple psychiatrists misdiagnosed as mental illness. This resulted in prescribed polypharmacy to treat the troubling symptoms of tolerance, including two benzodiazepine prescribed simultaneously, a Z drug, an antidepressant, and an antipsychotic.

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In late 2010, after discovering a magazine article authored by a journalist experiencing similar symptoms from his prescribed benzodiazepine, Nicole was prompted to research further and made the connection between her own troubling symptoms and the medication. This was followed by her immediate decision to withdraw, unfortunately, lacking the proper guidance or information at the time regarding the absolute need for a slow tap.

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She was negligently cold turkeyed in a detox center. This ultimately resulted in a severe and protracted withdrawal syndrome that persists to date when symptoms allow. Nicole writes about benzodiazepines and their potential to cause severe and or protracted withdrawal syndromes and volunteers. Her time helping with ongoing benzodiazepine awareness initiatives, including Benzodiazepine Information Coalition and Benzodiazepine Action Work Group of the Colorado Coor Auditorium.

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Nicole also co-founded the Withdrawal Project, and she does marketing, distribution and outreach for Medicating Normal, the film. She is an associate at the International Institute for Psychiatric Drug Withdrawal. She hopes to continue to use her lived experience to advocate for more information and awareness around benzodiazepine, risk and harms, as well as for changes in prescribing and withdrawal practice.

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So I think you're really gonna enjoy our conversation that we had today. I am a huge stand for more information around benzodiazepines and some of the concerns and risks for long term use, particularly around sleep and some of the. Concerning effects that it could have for sleep. Again, for more information on this topic, you can check out the benzo info.com site with lots of resources.

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I really appreciate that they have provided a number of steps that you can take if you're looking to explore more on this topic. So without further ado, let's jump into the podcast. So I get a lot of questions around sleep supplements, and I'm very hesitant to just throw out a whole laundry list of possibilities.

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One, I don't think it's the most responsible thing to do. I really do believe in testing to see what types of supplements make sense for you. And two, because I really truly believe that most of the things that you can do to improve your sleep are behavioral, psychological, environmental in nature, and often don't cost a.

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However, there is one supplement that I personally take every day and that I do feel quite comfortable with suggesting for most individuals to experiment with because of a couple of reasons. It's high safety profile and high rates of deficiencies in our modern society. Some put the numbers as somewhere around 80% of the population being deficient in this one area, and that is magnesium.

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So magnesium has been called the calming mineral, and some report that magnesium can increase gaba, which encourages relaxation on a cellular level, which is critical for sleep. Magnesium also plays a key role in regulating our body's stress response system. Those with magnesium deficiency usually have higher anxiety and stress levels, which negatively impacts sleep As.

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Now before you go out and buy a magnesium supplement, it's important to understand that most magnesium products out there, either synthetic or they only have one to two forms of magnesium. When in reality, your body needs all seven forms of this essential sleep mineral. So that's why I recommend a product for my friends over at Bio Optimizers.

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They have created something called the Magnesium Breakthrough, and taking this magnesium before bed helps you relax and wake up, refresh and energize. And while we don't recommend that you go two nuts on looking at all the sleep stage classifications on all your wearables. I will share anecdotally that many clients have reported improvements in their deep sleep trend numbers.

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Again, I don't want you going nuts on the sleep stage classification numbers on your wearables, but I do wanna let you know about that because I know that many of you do reach out on questions of how to improve your deep sleep. So I also love that bio optimizers offers free shipping on select orders, and they offer a 365 day money back guarantee on all their products.

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Plus they have a customer satisfaction rating of 99.3%. Very impressive, and you can get 10% off magnesium breakthrough. Again, this is the same magnesium that I use every single. And finally, you can get 10% off magnesium breakthrough. Again, that's the magnesium supplement that I use every single night by going to www dot mag m a g.

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So mag breakthrough.com/sleep is a skill and be sure to use the code. Sleep is a skill for 10% off. And welcome to the Sleep is a Skill podcast, really, really special and important podcast that we're doing today. We have had a previous podcast where we went a bit into the topic of benzodiazepines and.

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The far reaching effects that these can have on our sleep, including Z drugs. And today we're gonna go even deeper and talk about some other ways to think about these drugs as they affect your sleep and impact on your sleep. So just one. Thank you so much, Nicole, for being here today. Yeah. Thanks so much for having me.

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Awesome. So first off, would love to just hear a little bit about how you got connected with the Benzodiazepine Information Coalition, this nonprofit. So how this even came to be, because I understand you have a personal story in relation to this, and that might get us all connected to your sense of mission on this topic.

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Yeah, so Benzodiazepine Information Coalition, we also call ourselves B. We formed in 2016, and it started just from some harmed patients came up harmed by benzodiazepines. Some patients came up with the idea that, you know, we need a formal nonprofit to start educating and doing activism around the fact that benzodiazepines carry significant.

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And harms. So they got the nonprofit status, and then we started to recruit some physicians and other medical professionals and therapists and more harmed patients onto our medical board. And then our mission, we narrowed down to educating about the potential adverse effects of benzodiazepines. Taken as prescribed.

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So I got involved pretty soon after they formed. I think, like I said, I was harmed by benzodiazepines and Z drugs, sleeping pills. I took both as part of my story and a big part of my healing and coping with. The significant withdrawal syndrome that I experienced was just distracting myself and staying super involved in activism.

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So it was a really good place for me to join and get involved. And some of the stuff they do is research education. We do awareness campaigns. We work with the media. We send doctors to conferences. We work with other organizations doing similar things. We blog about benzos, we talk on podcast. Like this one, we interact with the injured patient community.

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So a lot of stuff going on. That's great. And with your story, I'm wondering if you could share a little bit about what happened for you that had you be passionate enough to then join this coalition? Yeah, so back in the early two thousands, I was in my twenties and I had just finished my master's training to be a physician assistant.

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So I was, you know, fresh outta school and I had my first job. And I think in hindsight it was just like some nerves about this. Big responsibility now of I have patients in my care and I'm brand new out of school and one day at work I just wasn't feeling well. I had also been sort of, this was back in the time where like Atkins was a big thing and my roommate and I were like eating tons of Asper tame and I think it.

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Made me feel bad, you know? So I told one of the physicians that I worked with that I wasn't feeling well, instead of just sending me home for the day or letting me rest, he prescribed Xanax. He said, What you described sounds like anxiety. And so I went home and I filled it and I started taking the prescription for it.

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Shortly thereafter, I started to develop a lot of. Symptoms, which I know now were adverse effects from the benzodiazepine, but at the time I didn't connect the dots and so I thought I was just developing some kind of a like psychiatric anxiety disorder. I became super anxious, depressed. I even had some suicidal.

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Thinking and feeling. So I became alarmed that I was having these symptoms and I started to see a psychiatrist. Mm-hmm. . That is when over the next five years, everything sort of just progressed, which is a typical story with lots of people who start on one benzodiazepine. They have problems. It's not identified as being from the benzo or the sleeping pill.

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They go to a psychiatrist and then they become, Like a victim of polypharmacy, essentially. Mm-hmm. So by the time it was all said and done, five years, I was on two benzos. I was on Xanax and Klonopin pretty high doses. I was on Ambien, which is a sleeping pill. And they're all structurally similar. You know, they, they work in the same way.

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So I was basically taking three. In the same class. And then because of all the side effects from the sleeping pills, I got put on an antidepressant, I got put on a stimulant, which doesn't make a whole lot of sense because you know, the benzos are bringing you down, the stimulant is bringing you up. And then I was put on an antipsychotic as well at that time.

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So I was like this walking sort of chemical soup.  by the time it was all, all said and done. Wow. Okay. So that was sort of the course that you found yourself on and then what occurred to kinda shift that. So basically I was deteriorating significantly. I mean, I had lost tons of weight. I had gastrointestinal problems that I saw specialists for and had all kinds of scopes and things that never really found anything.

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I had rashes, joint pains, all of these symptoms popping up that were just so bizarre and my psych. Symptoms. I was becoming a agoraphobic, like someone would ring my doorbell and I would be like crippled with fear and feel like I had like this urge to run upstairs and hide. I had feelings like driving a car.

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I couldn't be a passenger. I always had to be in my own car. Otherwise I would be panicked and I, I had never had anything like, Before I was so depressed I was having trouble getting out of bed and going to work, so my life was just slowly falling apart. Mm-hmm.  and my dad, who is an anesthesiologist, noticed that this was the case and there was an article in a magazine by a journalist about, His benzodiazepine story.

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Mm. And my dad just happened to subscribe to outside and he gave me the magazine and I read it, and I, I couldn't deny that. Like, this person essentially just like wrote my story. He was saying things that I totally related to. And so I felt in that moment, like I had discovered what was wrong with me, Like it was my light bulb moment.

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Unfortunately, what I did next was, Not what is advised to do, because I just, I didn't know, but I was desperate then to get off of this stuff, you know? Sure. I thought I'm being poisoned by these medications that are harming me, and so I want them outta my body. Yeah. So instead of taking the time and really doing tons of research and talking to people, I just called up a detox center and said, You know, I want to get off of this stuff, and they.

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Will take thousands of dollars from you, gladly check you in and rip you off of everything you know, in a matter of days. And it's sort of the wrong model too, you know, it's the 12 step addiction type thing in those places. So anyways, I checked myself in just desperate to get off. And the resulting withdrawal syndrome was,

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I mean, I don't even have words. It was horrific. It was just debilitating suffering, and I'm still actually over. 10 years off now and suffering a protracted withdrawal syndrome that still persists. It's slowly improved in the 10 years that I've been off, but I still have a lot of symptoms that, you know, interfere with my life, so.

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Mm. Well, one, thank you so much for sharing your story and also providing an example for people of what is possible, and I hear you. Thank you for also sharing. That part of the steps that were taking. You unfortunately had to go through some of that suffering and now are connected with this coalition to help get this information out of how more advisable ways to approach this and get real support so that it's not just going to some of these centers.

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Handing over all this money and really doing ourselves some harm, cuz it's a very different class of drugs and some of these other drugs that might find particular benefits by going through that sort of, as you said, the 12 step or what have you. So with all that, I'm wondering if you can share a little bit about course called the Sleep Is Skill Podcast.

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So what did you see for your sleep involved in all of this and, and maybe even some. Well, yeah, so basically one of the big things was rebound insomnia, right? Yeah. So these drugs are prescribed for. Sleep. And whenever you pull away a benzo, you get in the withdrawal syndrome, you get the exact opposite of what the drugs do.

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So benzos and sleeping pills cause sleep. They suppress anxiety. They work for seizures. They are muscle relaxant. And they also cause amnesia, which is why they give 'em before surgery, so, mm-hmm. , basically you take them away, you get this rebound. So everything I just said, it's the opposite. You get, Yeah, Severe anxiety, you get insomnia, you get muscle spasms and pain, seizures, psychosis.

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All of those things can result. Specifically for sleep, I noticed problems when I was still on them. Yes. So I started to develop something called tolerance withdrawal, which is when you start taking benzos and Z drugs, your body immediately starts working to try to work around this drug that you're taking.

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So the drugs stop working as effectively, essentially, and you need more to get the same effect. So if you stay on the same dose and you don't. You start to develop tolerance or tolerance, withdrawal, which is you can get withdrawal symptoms while you're actually still taking the same dose of medication.

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So I started having early morning wakings when I was taking benzos, and I was having trouble getting to sleep at night. You know, the real devastating sleep disturbances came after the rapid withdrawal. So yeah, for the first, I mean, Year. I think I, I barely slept like 30 minutes increments at a time. I had what people in the withdrawal community call toxic sleep or like toxic mornings where if you do fall asleep, like you wake up and you just literally feel like you've, like, been poisoned in your sleep.

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It's, it's, mm-hmm. . I can't explain it really unless you've experienced it, but you just wake up and you feel disgusting. I would jolt awake a lot in a terror state or a fear state. I had nightmares. I would wake up feeling confused and like not sure where I was, multiple wakings. When I did start to sleep, it was never, you know, through the night I would wake up constantly.

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My sleep time. Moved all around. Like sometimes I would sleep during the day and then other times I would sleep at night and it would sort of cycle and I just had to go with it. Like whenever I felt like I could sleep, I would just sleep. I even had like narcolepsy type symptoms where I could be, it'd be seven o'clock at night and I'd be sitting up talking to someone on the phone and then totally just be like, garbling my speech and falling asleep.

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Sitting up and speaking, extreme exhaustion, fatigue, obviously because I wasn't, I wasn't sleeping well and still to this day, I've not really had a nap since my cold Turkey back in 2010. I haven't been able to nap. At all. Wow. Okay. So in all that, you described some of the, the symptomology of certainly even before when you were using those and then when you got up.

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Is this what you're finding and hearing from within the coalition of the many people? I know you used the terminology that have been harmed through the use of these prescription drugs. I'm curious if you can share a bit. Is this, you know, kind of a common course that you're hearing a time and time again?

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What comes from the, the community that's involved? Yeah, so I mean, there's not a ton of long term studies on benzodiazepines and nobody really has looked at harmed patients because there's no benefit, there's no money in in studying like what goes wrong. Right. Yeah. So we have a lot of anecdote though, which is all of these thousands and thousands of people who essentially are.

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To the internet to find support because the medical community is just so lacking and understanding and education about this. So yeah, I'd say if you go online and you join some of these communities and start asking people what's happening to your sleep in withdrawal, it's all the same. Yeah. Tons of people having crippling, insomnia, terrible withdrawal symptoms, that kind of thing.

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I mean, it's not to. That everybody gets it as severely as I'm explaining. Mm-hmm. , there are people who get lucky, they can come off and they have no problems. Mm-hmm. , uh, we don't know why that is. It could be genetic or you know, who knows, But there are significant percentage. It's. It's estimated between like 40 and 80% of people who take benzodiazepines for any significant time period will develop physical dependence and have a withdrawal syndrome, so.

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Mm. Yeah, Absolutely. And I shared with you before we hit record that this has been a personal thing for me with my family and seeing people, unfortunately still grappling. The impact of getting off of these and not having the right assistance and a missing of clear information and guidance and, and then just the ill effects of that experience.

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So really a personal interest for me as well as just the number of people that will reach out. We've had this company sleep as a skill and people really, really struggling and just looking for support, resources, guidance. So I'm so happy that you all are kind of creating. Opportunity for people to have those where they really need them.

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So I know you mentioned the physical dependence. Um, I'm wondering if we can share a bit more about that language, physical dependence versus addiction, why that's so important. Yeah, this is huge. I mean, this is something that our organization really spends a lot of time and energy on because we feel like it's like a significant part of the problem.

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So even the FDA in their pamphlets and stuff differentiate between physical dependence and addiction. Yeah. But you hear a lot of medical professionals, The term addictive or benzos are addicting to describe the drugs. And the problem with that is it gives patients a false sense of security. This is what happened to me.

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I hear that the drugs are addictive or addicting, and I think. Like that doesn't apply to me because I'm not abusing them, right? My doctor gave them to me. I'm taking them exactly as prescribed, so I'm not an addict, and the addiction potential of them doesn't really matter. So it sort of gave me an excuse in my mind as to why I would be safe taking the medications.

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In order to really give people proper informed consent when they're being prescribed benzos and Z drugs, they need to be told the drugs cause physical dependence, which means that you can become neuro adapted to them. They cause changes in your brain and body just by way of chronic exposure. That's different from addiction.

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Addiction is behavioral symptoms where you're having cravings and you're doing everything you can to get the drug and get high from it, and that kind of thing. So if patients are told, you can become physically dependent, that means your body can adapt to these. It means you can have a, a withdrawal syndrome.

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When you try to stop them, it means you have to taper them to get off of them. Then they sort of understand like, okay. I'm at risk for all of these things and it has nothing to do with me abusing the medication or getting them off of the streets or anything like that. Also, it's really dangerous to apply addiction type treatments to people who are physically dependent on, so like, what happened to me?

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It's not how you. Benzodiazepine or Z drug physical dependence to rip people off in 12 step rehab centers. The drugs need to be so slowly and carefully capd. I mean, this should be a planned, incrementally slow reduction in dose that the patient is in charge of. And in some cases, people who are really sensitive to reductions will take a couple of years to complete their taper.

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Our medical director is a card. And she took over three years to get off of her 10 milligrams of Valium. Her, it started as Xanax, but she switched over to Valium in order to taper. So it's not uncommon that people take a really, a really long time to get off. Absolutely. I mean, even part of my origin story with the My sleep difficulties in the short period of time that I was on.

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Cause I was traveling at the time and not sleeping and at each different spot I was in, it was ambient, It was Xanax, it was Valium, All of those, and even for a relatively short period of time, really did experience the physical angst, the rebound insomnia. Then freaking myself out, going on the benzo forums and hearing like very scary stories.

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So being able to have a clear place that is thoughtfully kind of putting together real guidance. I think is crucial. So from that place, I'm wondering if you can share more about some of the strategies that the coalition does offer or steps to take. What are the steps? So someone's listening and they've been on whatever, they've been on Xanax for 10 years and it's impacting their life and their sleep and their exploring what that could look like to taper and they wanna do it responsibly.

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And what are those steps? Yeah. So first I would say like, don't freak out. You know? Yeah. Just calm down. You know, everything's going to be okay. But it is really important that you inform yourself. I mean, the biggest step I think in this is just getting educated first. Yes. We see a lot of people who panic and they start reducing the drug before they know what they're doing, and they think that they're tapering or their doctor even says, Cut it in half and cut it in half again.

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And they think that's a taper, but it's not. And one thing I wanna stress. Sometimes when people make mistakes in benzo tapering, we're not sure why, but there's a concept called kindling that you can research. It's called sedative hypnotic kindling. It's also something we see in alcohol. Each successive withdrawal can be more severe, so if you can get it right the first time, You can potentially decrease how bad your withdrawal is gonna be.

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But the people who make tons of mistakes in the beginning often have a harder time when they finally figure out how to get it right because they've done so many things wrong to begin with. So if you can really get educated. That's super important. We offer the Ashton Manual at our website, benzo info.com.

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That is a tapering guide by a psycho pharmacologist out of the UK named Dr. Heather Ashton. One thing about that guide is that it's just a guide. Yeah. Things have really evolved since the nineties when she was doing this work, and I would say, Join some of the online communities. The patients are the experts in this.

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They know because we've been doing it for years, you know, we know how to taper, we know all the tips and tricks and ways you can manipulate the drug in order to get tiny little reductions. And so, yeah, like you said, you joined some of the withdrawal groups and they were scary and they can be, but they also are filled with a lot of support and really, really good information for people to get educated.

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So I would say definitely start there and you're gonna need a doctor because you're gonna have to get repeat prescriptions. One thing we have found is for some reason, The physicians are happy to prescribe while the patient has been taking them for X amount of time. But in some instances, if you start having withdrawal symptoms, and I think it comes back to that language bit that we talked about.

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Yep. A lot of doctors confuse addiction and physical dependence, and so you start having withdrawal and they panic and they think you're addicted to the drug. They don't understand that you're just physically dependent, and so patients have a lot of problems finding a doctor. To prescribe the benzo at that point because it's a controlled substance.

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They wanna cut you off, and that's the worst thing you can do. Mm-hmm.  to somebody physically dependent on benzos. Stop their supply. So we also have a doctor's list of physicians who are aware of benzo, daine problems and tapering and all that kind of thing. So if people find themselves in that position, they can hopefully find a physician who will work with them.

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I think that's really important cuz I've encountered a number of people that are struggling and are further struggling to find support of kind of benzo literate doctors that understand. What this all can look like, the concerns of the polypharmacy, um, approach that you are speaking to beforehand, that many people find themselves now a product of, and then how to set themselves up powerfully with someone that's gonna really be by their side along, along this path.

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So one, you're saying that on the website we can find that kind of directory or some of those, you know, have remote options if they're not local to them. What does that all. You can't prescribe across state lines because there is a controlled substance, but there are physicians who do work supporting patients and giving guidance across state lines.

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So you could maybe find something like that if you can't find somebody locally, but, The groups, like I said, benzo buddies. There's tons of Facebook groups. Yeah, they have a lot of people in them who are going through this. And so you can easily post, You can even be anonymous if you want to, and say, I live in wherever and I really need a doctor.

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Does anybody have somebody they're working with that knows what they're doing? And you might find somebody that way as well. And do you find, so when people are really struggling, do you find, and maybe this is a longer conversation or, but. Are there paths that you commonly see where people are put onto different drugs along the way to kind of deal with some of these symptoms to titrate down?

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Or is that just really case by case and, and hard to say? Yeah, I mean, it is. A common thing where we see, you know, some physicians will try to put patients on other things like antidepressants or they'll say, you know, antidepressants are a safer alternative to benzodiazepines. But there's been studies, one I'm thinking of specifically by Cochran Collaboration, which is a really respected institution that does a lot.

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Studies and basically like almost all of the symptoms that you get in Benza withdrawal, you can see an antidepressant withdrawal and you see the antidepressant folks who are physically dependent and tapering and in withdrawal saying their sleep is totally trashed from Yeah. Coming off of anti. So it's really not that different.

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Mm-hmm.  and also Dr. Ashton and her manual talks about this a little. There's a phenomenon that anecdotally presents where whenever people are in benzo aine withdrawal, sometimes there is like a sensitivity that develops to all kinds of things that people didn't have before. So you may have tolerated a medication prior, but when you're in benzo withdrawal, you try taking something, you have like a horrible reaction to it.

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So we don't know why, but it's very common that people report adding other drugs and stuff just can throw them for a huge loop. Yes. So one of the sort of things that we say is like, please be careful adding things, including supplements and that kind of. Stuff and the golden rule kind of is to try not to add anything to complicate the situation, if at all possible.

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And there are people who are suffering so bad that they feel like they've got to just try something, a beta blocker, cuz they're having horrible heart palpitations or things like that. For some people it helps, it does work. So you have to weigh in your own circumstance, which is best. Sure. Absolutely. Is there anything you'd like to make sure that you convey that are kind of misnomers or things like messages that you feel don't fully illustrate this problem that we're dealing with?

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As far as what some people are calling this, the hidden epidemic of Benzodiazepine Z drugs. Is there anything you wanna make sure we get out? Yeah, I mean, I think the first thing is that addiction to benzodiazepines is really, really rare. Mm-hmm. , they did a study and it was of all benzodiazepine users, only 2%.

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Actually it was 1.5% of them qualified for a substance use disorder diagnosis. So this idea that people are addicted to their benzos is not really. Common more so it's this physical dependence issue that we've talked about. Yeah. They are abused and misused. Sometimes people use them to get high and that kind of thing, but that's not addiction either.

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Mm-hmm. You can use, like think of kids in college who get drunk on the weekends. They're not. Particularly diagnosable as having a substance use disorder, but it's just they're recreationally using a drug. So benzos are recreationally abused, but this true addiction is very, very rare. And I would say I just wanna draw attention to the protracted bit of things.

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Like I said, I've been in withdrawal myself, and I don't even like to call it that. We're trying to come up with a new term called bind, which is benzodiazepine induced neurological dysfunction, because we feel like saying I'm in withdrawal for 10 years doesn't really make sense. Like, yeah, sure. I haven't been withdrawing from anything.

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I haven't taken the drug in a decade, but I still have these symptoms and it's probably due to some type of neurotoxicity or damage. Right that the drug and the abrupt withdrawal did to my system. So it's very real. It happens. And I think one estimate by Dr. Ashton was about 15% of people who develop withdrawal can go on to get protracted.

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It's typically in people who have rapid withdrawal. But it can occur in people who taper slowly as well too. So the last thing I think that I wanna mention is just that this suffering is so bad. Yeah. In some cases. And you go to the doctor and you try to explain what you're going through and how horrible it is.

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And we often get these like sort of. Gas, lighting type. Yeah. Sentiments back. Like, just get off the internet or you know, stop thinking about it. Go do something different. And to me that's like telling someone who's like being lit on fire with gasoline and a match. Like, just don't think about it. You know?

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It's that bad. The suffering that can result from. Where these patients are suffering badly. We have suicides in our community all the time because people just lose hope and they give up and they don't wanna suffer anymore. They desperately wanna live. So it's not like a, a depression type. I just don't wanna be here.

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Suicide. It's more people give up because the suffering is so bad and they just, they can't take it and it goes on and on and on in some cases. So yeah, I just want people to know. This is the risk with this drug class that, that you're taking. It can be really, really bad suffering. So one, I so appreciate those points of clarification.

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And I'm curious, real quick if you can share in what you've seen with the coalition, any words of encouragement for people that might be listening. Certainly, I was one of them that. Desperately looking for the success stories, the examples, like someone like you and it granted, I, I hear what you're sharing, that you're still dealing with certain things, but you've gone through that course.

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You've now a stand for support for others. What kind of case studies can you share of people being able to kind of get through this and have a real life on the other side? Yeah. So it sounds like doom and gloom. You know, my story, I, I don't share it because I wanna scare people. Right. You know, But it does scare people.

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It scares people, and I'm sorry for that. Yeah. But I, I share it because there are other protracted people who need to know that. Of course, they're not, you know, they're not alone. This is real. It happens. But I'll say that because I'm protracted. I've been in the community for a really long time, and I've been doing this work for a long time, so I.

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Countless people. Yeah. And not a lot of them are still here 10 years later, you know? Mm-hmm. . I can probably count on one hand the people that were here when I first started, so that means that most people are better in that 10 year period. Most people are better far before 10 years, Three years seems to be like a magic number, sometimes 18 months.

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But yeah, people get better. They move on, they go back to life again. I talked to a friend the other day who's been healed for quite some time, and he said, I don't even think about it anymore. You know, it just, it's gone for my brain. It's something that happened and there's even some people who can laugh about it.

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You know, it's not really funny when you, you're going through it or when you see the devastation that it causes in people's lives, but it does make you kind of nutty and you do crazy things and you're filled with anxiety. And so some of the stuff, I guess in hindsight, people are just trying to take a healthy path and sort of laugh at themselves a little.

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But sure lots of people taper and they don't have such a hard time as somebody like me who cold turkeyed and they're successful and they feel so much better when the drugs are gone and they're not battling this tolerance withdrawal anymore and they're not bound to doctor's appointments and getting refills all the time, that kind of thing.

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So, and of course on the topic of sleep, do you hear reports? Cause I hear what you're saying too, like part of. Presumed sign of success is that they're no longer a part of the community more cause they're not presumably struggling. But do you hear sense of people's sleep improving over time? So for those that might be in the thick of it or you know, a sense of, Ugh, I can't sleep.

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Am I ever gonna be able to sleep again? In some of those scary thoughts, do you see examples of, of the opposite of the contr. I mean, like I said, my sleep is even improved in the 10 years. I get more than I did in the beginning. It's still pretty bad, but there are lots of people who start sleeping again and you know that that improves for some people will say, you know, Well, I feel 95% back to my old self.

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I can function again. My. You know, once in a while I have a bad night or it sort of comes back and I can tell it's not fully better. And other people say like, I thought I was where I was gonna be, and then two years later, my sleep got even better, or the symptoms that I had lingering still improved. So, you know, with time and that sort of thing, sort of seems to be the main thing.

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Moves people more in the direction of health is just giving it time once you get off. Great. Thank you so much. So, um, curious so we can learn from what you've put in place over your many years of kind of being in this conversation and still dealing with some of those protracted symptoms, but we do always ask each person four questions.

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So our first one would be, what does your nightly sleep routine look like? Right. Okay, so, you know, basically I'm kind of at the mercy of my body and the withdrawal syndrome that I'm still dealing with. So a lot of things that I try don't really work or change anything, but I do the best I can. So I, I go for a walk before sunset, and then I take a bath, and then I kinda wind down with YouTube or I talk to somebody on the phone.

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And then once I'm tired, I just, I go to bed if I can't sleep. Keep trying to distract. I don't panic or freak out about it. Right. And I just kind of go with the flow. So. Awesome. And morning routine. What might we learn from that? So that's when I feel the worst. Like I said, that sort of toxic waking thing.

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Mm-hmm. . Yeah. So I have blackout curtains that I use because they've held, and so I just went with it and I just kind of lay there and just let myself wake up and sort of that toxic feeling dissipate a little bit. And I don't put pressure on myself to like, it has to be some fantastic morning thing that I'm doing.

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I know there's things like you're supposed to get out and. Sunlight is in the morning and that kind of stuff. But because of where I am, I just rest and I move when I'm ready and that kind of thing. Mm. So kind of just providing yourself some grace and humanity. Sure. And what might we see on your nightstand or proverbial nightstand if you're on the go, traveling, any of that, any kind of products or ambient or ambiance I should say, or anything?

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Uh, note worth. So not really because I still have a lot of cognitive issues from the withdrawal, so I can't really read books or anything like that, but I just kind of try to make my room as sort of. Cozy and luxurious as possible. I mean, sleep is so important. So I spent money on nice sheets and a mattress.

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Yeah. And blackout curtains. And I keep the room cold. You know, just really sort of spoiling myself in the sleep department to try to enhance sleep as much as possible. Great. And the last question is, what has made the biggest change to your sleep, or maybe biggest aha moment in managing your sleep? Yeah, so I guess, you know when this all started, I was in my twenties and looking back.

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In our twenties, I guess we're not the smartest. Yeah. So we haven't gained all of our wisdom and stuff, but I think I just really took for granted like how important sleep was and caring for your body and all of those things. Sure. And you sort of, you know, I heard a quote that was like, Something about good health is a crown on a well man's head that only the sick can see.

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Mm. So losing your health to benzodiazepines and, and sleeping pills has really made me appreciate like how much effort it takes to get good sleep and to practice sleep hygiene and to eat well. So I don't. A lot of the foods I ate before this happened, I'm really cautious about my diet and I exercise and I don't have caffeine or I, I don't take drugs or use alcohol, nothing like that.

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So I've really started to put in a lot of effort into my health and my sleep. That's great. And the last question I would ask is for anyone listening, I'm sure if they're struggling with this or know someone that is, they want to know, Okay, how can I get linked up with this coalition? What does this look like?

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What are those steps? Okay, so we have a website. It's benzo info.com, and everything you need is there. All of our resources, our doctor's list, are linked to the Ashton Manual. There are some other organizations as well that you can go to. There's one called Inter Compass Initiative. And the withdrawal project, they have really good, valuable information.

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Surviving antidepressants.org is mostly about antidepressants, but they do have some benzo information as well. And then there is a film that I'm actually a part of on the outreach team called Medicating Normal. It's a really good film that sort of summarizes the problems. Benzos and psychiatric medications in this whole withdrawal phenomenon and everything, and they are@medicatingnormal.com.

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Oh wow. Thank you so much for all those resources. You know, I think that that can be the struggle when you're, have the sense of a lack of awareness or agency of what to do next, what steps to take, and you're being told by particular people that you feel like you should trust one thing, and yet you're having these experiences.

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The more resources and people that have been through these struggles like yourself and like others, and then professionals there, it's just so, so important. So thank you for the work that you're doing and for taking the time to be on this podcast. I know it just makes such a huge difference for people listening.

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So really appreciate it. Yeah. Thanks for having me. Of course, of course. Thank you. And please stay in touch too as you continue to make some of these leaps and bounds and, and the real difference in this community and hopefully legislation and other things down the wrong as well as documentaries. So really, really awesome.

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So thank you again, Nicole. This is great. Yeah. Thanks a lot. You've been listening to The Sleep Is a Skilled podcast, the number one podcast for people who wanna take their sleep skills to the next level. Every Monday I send out something that I call Molly's Monday Obsessions containing everything that I'm obsessing over in the world of sleep.

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Head on over to Sleep is a skill.com to sign up.