Here's my full interview with cardiologist, Dr. Christy Huff and physician assistant, Nicole Lamberson where we discuss how they both survived Xanax and are healing from years of a severe, debilitating protracted withdrawal syndrome.
VIDEO TRANSCRIPT
Welcome to Recovery: The Hero's Journey. Your host is Dr. Patricia Halligan. If addiction or prescription drug dependence affects you directly or indirectly, whether it's you, a family member or a close friend, stay tuned over the next hour. As we explore substance use disorders, process addictions and prescription drug dependence, we'll be discussing the painful reality behind these disorders and what can be done to help. Now here is Dr. Patricia Halligan.
Dr. Patricia Halligan:
Welcome to the second episode of Recovery: The Hero's Journey. Today's episode is surviving Xanax – when the doctor becomes the patient. I'm your host, Dr. Patricia Halligan. I'm thrilled to introduce you to two of my favorite modern day heroes, cardiologist, Dr. Christy Huff and physician assistant, Nicole Lamberson, severely harmed by benzodiazepines. Both of them work tirelessly to spread the word about the dangers of benzodiazepine dependence and the importance of long, slow benzodiazepine tapers. They are indeed true patient advocates for anyone suffering from benzodiazepine dependence or severe protracted benzodiazepine withdrawal. Just to clarify, we're talking about a class of controlled substances known as sedative hypnotics that include drugs like Xanax, Klonopin, and Advan. We're including the Z drugs, also Ambien, Luta and Sonata, which are similar to benzodiazepines in terms of dependence and withdrawal. Christy Huff MD is a cardiologist and director of Benzodiazepine Information Coalition, a nonprofit that educates about the adverse effects of prescribed benzodiazepines.
Dr. Huff attended medical school at the University of Texas Southwestern, where she graduated alpha omega alpha. She completed an internal medicine residency at Washington University in St. Louis and a cardiology fellowship at UT Southwestern with a focus in advanced cardiovascular imaging and noninvasive cardiology. Dr. Huff is a fellow of the American College of Cardiology, was a private practice cardiologist in Fort worth, Texas until 2011. Dr. Huff experienced benzodiazepine adverse effects and injury firsthand. After three weeks of prescribed Xanax use for insomnia in 2015. Over a three year period, she slowly tapered off benzodiazepines utilizing Valium and suffering disabling withdrawal symptoms for the entirety of her taper. Her personal experience led her to realize the serious risks of these medications and the severity of the benzodiazepine withdrawal syndrome, neither of which were emphasized during her medical training, Dr. Huff specifically advocates for better education of physicians regarding the adverse effects of benzodiazepines and how to safely taper patients off these medications.
Nicole Lamberson 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. In 2005, she was prescribed Xanax for 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 benzodiazepines prescribed simultaneously, a Z drug, an antidepressant, a stimulant, and an antipsychotic. Nicole made the connection between her own troubling symptoms and the medication, and immediately decided to withdraw. Unfortunately, lacking the proper guidance or information at the time regarding the absolute need for a slow taper.
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 volunteers for time helping with ongoing benzodiazepine awareness initiatives, including the Benzodiazepine Information Coalition, the benzodiazepine action work group of the Colorado consortium and the world benzodiazepine awareness day. Nicole co-founded the Withdrawal Project, a grassroots community effort of inter compass initiative. And she does marketing distribution and outreach for Medicating Normal, the film. As her healing allows, Nicole plans to be even more involved, perhaps either working and/or volunteering in some capacity with a focus in prescribed drug withdrawal management, and also participating in education initiatives around benzodiazepine and psychiatric drug withdrawal for medical providers in the future. Thank you both for agreeing to come on the show today, Dr. Huff, I wonder if you could begin by sharing your story with our listeners?
Dr. Christy Huff:
Sure. So I was a stay at home mom as of 2015, and I was prescribed Xanax around that time. Because I had developed, I had a health crisis. I had a severe dry eye syndrome and I was losing my vision. And while we were trying to figure out to treat that or how to treat that my doctor's prescribe Xanax to help both with it was a scary situation. And also I really, I just couldn't sleep because it was so painful. And so I just, just started taking out 0.25 milligrams of Xanax only at night because I wanted to be cautious and careful with it. Well, about three weeks in, I started to develop some new concerning symptoms. I had a tremor and also some anxiety that I hadn't really ever experienced before. And the symptoms were subtle at first. Over time they did grow worse, but something was terribly wrong.
And so I went back to my doctors and they thought maybe this was some kind of medical condition that could tie into the dry eye syndrome. And so I underwent this whole battery of testing, you know, blood work, MRI, lumbar puncture, everything came back normal, but I continued to grow sicker. And during that time I was encouraged to take Xanax, you know, even during the day, no more than I was ever prescribed, but just to help treat this anxiety as I was experiencing. When I really figured out what was going on and it was this Xanax that was making me sick. I was asked to hold Xanax for one of those medical tests for about 12 hours. And I developed severe withdrawal symptoms. I couldn't breathe. I couldn't swallow muscle contracture. And as soon as I took a dose, those symptoms all just melted away.
So I got online, did an internet search and Googled Xanax or benzodiazepine. I can't remember what I Googled exactly. But I found the website, Benzo Buddies, and it's a web forum for patients withdrawing from benzodiazepines. And what I read there was really shocking. It basically described everything I was going through. So basically it became clear that my body became physically dependent on the Xanax and that I was experiencing inter dose withdrawal. So basically withdrawal symptoms between doses because the half-life of Xanax is so short. And so at that point I knew that I needed to come off the medication. Well, I tried to reduce the dose on my own and I was unsuccessful because the withdrawal symptoms were so severe. And I just wanna stop right here and say, what I was experiencing was not addiction. It was the normal physiologic effects of my body adapting to the drug.
And at a certain point I was just taking the medication to stave off the withdrawal symptoms. So unfortunately when I went back to my doctors to say, look, I want to get off Xanax and my body's dependent and I need help. They some of them didn't believe me. Some of them treated me like, as in like I was an addict, I was, I was told a number of things like you can't be dependent on the medication because you've only been on it for a few weeks. You can just stop the medication, cold turkey, and that's how you can get off. So that certainly wasn't going to work for me. And I was even given an antidepressant to try to treat some of the symptoms I was having and that ended up making things worse.
So finally I did find a psychiatrist. I brought him a copy of the Ashton manual, which is a guide for withdrawing from benzodiazepines. And based on that protocol, we worked together. He switched me over to Valium, which has a longer half-life and help cover the inter dose withdrawal symptoms. And then I was able to do a slow taper from there. I was not able to follow the protocol and the manual because it was just too fast for my body. And so I ended up tapering over a period of three years, a little over three years. And unfortunately, despite doing such a slow taper, I still experienced a host of disabling symptoms. At one time, I counted up to 80 different withdrawal symptoms.
It was a nightmare. I mean, it was just utter hell and not just the symptoms itself, but they were just utterly disabling towards the end of the taper. I could barely care for my basic needs, like cooking and taking a shower and driving. So it was just profoundly life affecting.
Dr. Patricia Halligan:
And, and if I get you right, this was a very small dose of Xanax for a very short period of time.
Dr. Christy Huff:
Yes. And all I took was 0.25 milligrams for three weeks and then things started to go haywire from there.
Dr. Patricia Halligan:
Totally unexpected.
Dr. Christy Huff:
Right, right. I was, I was completely blindsided about what happened.
Dr. Patricia Halligan:
Had you ever seen this before or heard of this before you developed it?
Dr. Christy Huff:
No, honestly, no. I didn't know. And like I said, I, I discovered what was going on via the, the internet shockingly enough.
Dr. Patricia Halligan:
And did you learn this in med school? Because I know I didn't,
Dr. Christy Huff:
No, I didn't. I think I was taught two things about benzodiazepines. I was taught, you know, short term be cautious about prescribing, which is that's good information. And then also about the risk of addiction. But I didn't really understand the difference between physical dependence and addiction and also how long it can take to taper off the medication.
Dr. Patricia Halligan:
Right. And this clearly wasn't addiction. I'm glad you made the distinction. This is somebody who took a small amount of Xanax for three week period for you know, a dry eye to help with sleep and relax you at bedtime and no history of addiction. Didn't take other than, as prescribed,
Dr. Christy Huff:
Correct.
Dr. Patricia Halligan:
And totally debilitated for a three year period.
Dr. Christy Huff:
Yes. Yes.
Dr. Patricia Halligan:
How did your family react?
Dr. Christy Huff:
I think they were devastated. I mean, I think my husband got to the point where he just, you know, put one foot in front of the other and we got through it, but it was definitely life altering had to get a nanny to help care for my child for a while. I just couldn't function as a mother. So it was devastating.
Dr. Patricia Halligan:
Oh boy. I think the worst thing of this is that nobody can help you until you finally find the psychiatrist who's willing to work with you. Had he ever heard of the Ashton manual to help you withdraw?
Dr. Christy Huff:
No, he hadn't. He hadn't, I just lucked out that he was willing to, to listen, you know, and I think that's really what it takes. Because I went through a number of providers that just weren't even willing to listen.
Dr. Patricia Halligan:
What's been the worst thing about having a protracted benzodiazepine withdrawal?
Dr. Christy Huff:
So, you know, beyond the fact that it was just torture and this went on for years, there was a almost five year period where I was mostly incapacitated. You know, I would just say though how it affected my family and my ability to take care of them, Like I said, I had to have a nanny to take care of my daughter and I missed out on years with her. There are blanks period in my memory from like age four to nine of my daughter. And I can go back and look at pictures of her life back then, but that's not quite the same. So I missed out on time with her and it also affected my daughter as well. She developed very extremely picky eating and that's something we're still working on today.
Dr. Patricia Halligan:
The FDA recently amended their black box warning on all benzodiazepine prescriptions. And I know that you've looked at it. In your opinion, Dr. Huff, is the warning clear enough and strong enough. And what would you change about it? Can you talk a little bit about the, the new updated FDA warning black box warning?
Dr. Christy Huff:
Sure. So I have a lot of thoughts about this. Just for background, they recently updated the box warning for benzodiazepines to include the risk of abuse, addiction, physical dependence, and withdrawal reactions. And this was after they did an extensive review that included the existing scientific literature and they also reviewed their adverts event database as well. And I was able to obtain, there was 175 page report that they generated from. And I got that from freedom of information request and I looked over it and you know, I saw a number of things that were encouraging. And, but it doesn't necessarily tell the whole story. You know, I'll start with the, the good things. I was excited to see some of their findings because they aligned with things that benzodiazepine awareness advocates has said for years. You know, the first thing they noted that addiction abuse are mostly in the setting of poly substance use.
Like in combination with opioids or alcohol or other drugs of abuse. But if you're just taking them as prescribed, then the chance of addiction is going to be pretty low. Also the adverse event can actually occur with prescribed therapeutic use. You don't have to abuse the drug to have adverse effects from the medication. And that withdraw can be like in my case, a long process some patients in their database were withdrawing over the coast course of months or, or years. And then also the abrupt and over rapid tapers or harming patients. Some of the case reports, they noted people were being pulled off the medication too fast and suffering adverse effects from that and severe withdrawal. And so this prompted the FDA to recommend a patient specific plan to gradually reduce the dosage, which I think is a great recommendation.
Beyond the gradual taper, they also recommended judicious prescribing which is basically use an alternative to a benzodiazepine or use the lowest dose for the shortest time possible. And I think those are recommendations we can all get on board with. But I do still think there's more work to be done so that the labels clearly spell out the risk. And I think the big thing that I would like to see spell out more clearly is the severity and the length of time that people who suffer protracted withdrawal. Basically this syndrome is not as rare as they let on. Because if you look at Ashton's work, 10 to 15% of people withdrawing from long-term benzodiazepines, which is considered more than four weeks, of use they can experience this Protracted Withdrawal Syndrome.
Dr. Patricia Halligan:
And that an alarmingly high number. And I don't doubt it.
Dr. Christy Huff:
Right.
Dr. Patricia Halligan:
That's I think it's probably pretty accurate.
Dr. Christy Huff:
Yeah. I think that's consistent with what we're seeing and advocacy as well. And so, and I I've known people that have actually committed suicide because of the severity and the ongoing nature of the symptom. So that's something that I would wanna see spelled out in writing
Dr. Patricia Halligan:
It never ends by the way you're talking about it. This is living hell that just never ends. And there's almost no words that describe. I think it was an English physician John O'Connor and he said it's the body becomes its own torture chamber.
Dr. Christy Huff:
That's exactly how it is. And when you're in it, you just cannot see your way out of it
Dr. Patricia Halligan:
Just excruciating. Right? Like inhumane and I could stand anything for 24 hours. You might be able to push it to about a week, but if you're talking years, I understand why people want to end their life.
Dr. Christy Huff:
Right. And I understand too, having experienced it firsthand because I mean, there were times where I thought about suicide as just a way out.
Dr. Christy Huff:
If I had not gotten better, that would've been an option, unfortunately. It was just that bad.
Dr. Patricia Halligan:
Oh, absolutely. People think I'm gonna put my family out of their misery. I'm gonna put me outta my misery. This is, it feels hopeless after a while I would imagine.
Dr. Patricia Halligan:
So what would you change? What would your wording be on this black box warning? I think it was Shane Kenny, he said he would say "it's severe, benzodiazepines can cause severe neurological harm." And I thought, "How do you get the message across?"
Dr. Christy Huff:
I think I would agree with that because this is a neurological injury or damage that we're talking about whenever the withdrawal is just going on for months or years. So, yes, I think something like that needs to be in the warning.
Dr. Patricia Halligan:
I think that would be wonderful. Do they give clear advice on how to taper? I know it has to be patient lead, but do they say what duration of time they should like a minimum amount of time? Like I kind of wish they said, "At least look at like 9-12 months minimum or something to that extent." Some people take years and years like yourself.
Dr. Christy Huff:
Unfortunately they don't say anything like that. In fact, if you look at the Xanax medication guide they list the maximal rate of taper as 0.5 milligrams every three days. Wow. Is just an insanely fast rate, which probably would not work for anyone. Nope. So so I would like to see something more in line with like what we're seeing in the online support groups, which feedback from those groups suggest, you know, less than five to 10% reduction monthly is better to better tolerated
Dr. Patricia Halligan:
Because those people then are less likely to develop a, a severe protracted withdrawal syndrome. Right. If you don't shock the, the central nervous system, which is very, very gradual and maybe they won't become totally debilitated.
Dr. Christy Huff:
Exactly. That definitely lowers the risk, I think.
Dr. Patricia Halligan:
Right. Oh, those are some great insights. I love the fact that you encourage people who have been harmed by benzodiazepines to report it. And what good does that do and how do they report it?
Dr. Christy Huff:
So this is something that's near and dear to my heart, cuz I've spent a lot of time helping harm patients file FDA MedWatch reports. So in the, here in the United States, we have the FDA MedWatch system. Now, if you're in another country, you, you hopefully have some other a similar agency where you can report, but I'm just gonna talk about MedWatch. And that can be found on the FDA's website, it's basically their adverse events database. And if you have an adverse event, you should go there and report it. There's also a direct, a direct link to it on the BIC website as well. And it's really important to do this because when enough reports are filed, it generates a signal that the FDA is obligated to investigate. And of course we've already seen this in action because a lot of the findings that led to this boxed warning were from their review of the adverts events database.
Dr. Christy Huff:
So, and before you think that, well, it's, it's closed the back box, warning's already out there's, you know, like I said, there's still more work to be done. So please keep reporting because I'm, mm-hmm, <affirmative>, I've heard that the FDA's benzo review committee is still open, so there's still, you know, investigating. So, you know, keep those reports coming and I'd especially like to see people filing reports that have experienced severe withdrawal or Protracted withdrawal and severe outcomes like suicide or disability. But it just so you know, anybody can file a report on your behalf. It doesn't have to be the patient themselves. It can be the patient's doctor, family friend, an advocate, you know, anyone can do it.
Dr. Patricia Halligan:
So it might help them feel like they're contributing to fix the problem or exactly improve awareness. It feels like nobody understands doctors who tell you just stop it. You're at a low dose. You've only been on it for a couple of weeks. What does inter dose withdrawal feel like?
Dr. Christy Huff:
Oh, so mine was got to be pretty bad towards the end, by Xanax doses. I was having to space it every six hours towards the end, before I was able to get switched over to Valium. And my doses would last be between two to three hours. And then I would be on floor withdrawal and I'm talking like I had an elephant on my chest and I was gasping for air for three hours until my next dose and my muscles all clamped down and shaking. And it was, it was terrifying.
Dr. Patricia Halligan:
I wonder why they don't just take Xanax off the market. I mean, it's implicated in one third of suicides. It is the most abusable benzodiazepine. It, it is highly potent and rapidly acting. You know, I just wonder why they just don't get rid of it.
Dr. Christy Huff:
Yeah, that's a good, good point because it does all the ban benzodiazepines can be bad, but that one, I know at least in my case was horrible. And I think that the short half life and the potency just give it leads all sorts of problems.
Dr. Patricia Halligan:
Yes. It's the one that the emergency room across the country tend to see the most incidents with... the most accidents, the most overdose deaths, the most suicides related to Xanax. Well, those are some wonderful insights. I really appreciate your thoughts on this and sharing your, your story.
Nicole Lamberson:
Sure.
Dr. Patricia Halligan:
Nicole, I wonder if you'd mind telling the listening audience a little bit about your story what it was like then and where you're at now. Sure.
Nicole Lamberson:
Thanks for having me. And I just wanna say I'm having some allergies, so if I sniffle or my throat cracks, that's why so early in the two thousands, I was fresh outta PA school. And I was having some stress at work, you know, nervousness, just typical. I think in hindsight, just kind of nerves from being a new, you know, PA working in, in medical environment and just sort of getting used to all the stress and responsibility that came with that. And so one of the physicians actually that I worked for prescribed Xanax for me, I was feeling sick at work one day and he said, oh, oh, that's just, you know, stress and anxiety here, take this. It was, I think 0.5 milligrams or 0.25. I'm not sure. And just on a PRN basis.
Nicole Lamberson:
So I started taking it and like Christie, you know, shortly after starting it, I in hindsight got adverse effects. I, I believe I was having interdose withdrawal and tolerance very fast, but I didn't put, you know, two and two together as fast as Christie did within weeks. I actually believed that something was wrong with me, that I had an anxiety disorder or you know, I was developing new, severe mental health type stuff. So I did seek psychiatric care. I started to see a psychiatrist. I was also having like depression, which I think was from the Xanax. And so when I went to the psychiatrist, of course they misdiagnosed a lot of the adverse effects that I was having as so-called mental illness. And then I stayed in psychiatric care for the next five years. And basically they added more and more medications and each new medication came with its own set of side effects and adverse effects until basically I was like a chemical soup, you know, I was on so many drugs and sicker than I'd ever been in my entire life. So after the Xanax, I was put on Klonopin, so that's two benzodiazepines at the same time. And I, the rationale given at the time was that, you know, know, I could take the longer acting Klonopin three times a day. And then the Xanax went in between that's
Dr. Patricia Halligan:
Crazy. Yeah,
Nicole Lamberson:
Nuts. I was taking five doses of benzo and then at night she added Ambien for sleep. Oh
Dr. Patricia Halligan:
Man. Which...
Nicole Lamberson:
Is like a benzo.
Dr. Patricia Halligan:
Unbelievable.
Nicole Lamberson:
Yeah. And I also got put on Seroquel for sleep, which if you read some of the literature is pretty much, you know, contraindicated, you're not supposed to use that for sleep. Remeron, because I got put on Adderall because the benzos made me so depressed, but I couldn't tolerate SSRIs or SNRIs. I would have like some kind of reaction to them. And then
Dr. Patricia Halligan:
They were treating one side effect with another drug. Right.
Nicole Lamberson:
Yeah. And so, because the Adderall made me not hungry and I lost all this weight, then they gave me remeron to sort of stimulate my appetite. I mean, yeah. It was just like, you know,
Dr. Patricia Halligan:
Vicious cycle.
Nicole Lamberson:
I think my brain just didn't know what to do. It was, you know, stimulated and then it was tranquilized and, you know, so I got really, really sick and my, my father as a physician and he started to notice that something was wrong, that I wasn't myself at all. I was having, you know, mood changes. And he happened to just find a journal article in, in outside magazine that was written by a guy named Matt...he told his story in this magazine. And my dad suspected that that was what was happening to me and gave me the article. And I read it. And immediately I knew, I knew what was, you know, after five years of chasing my tail with all these pills and, and doctors because like Christi, I had gone to and had all kinds of medical testing, I had, you know, upper and lower GI scopes. I was having steroids injected into my wrists because I was having excruciating like tendonitis and joint pains, which I think was also from benzodiazepine tolerance and interdose withdrawal. I mean, all kinds of doctors and specialists, dermatologists, cause I had rashes everywhere. And that, you know, Matt's article was like my light bulb moment.
Dr. Patricia Halligan:
Thank God that he wrote about his story.
Nicole Lamberson:
Yeah. I mean, that's part of the reason I even tell mine because I feel like if Matt wouldn't have told his, I don't know what would've happened to me. You know, if I ever would've figured it out, I could have done five more years
Dr. Patricia Halligan:
... and maybe ended your life. Yeah. But what a tragedy that the medications that they were giving you were making you sicker and you and Dr. Huff both had to be your own detectives, right? Yeah.
Nicole Lamberson:
Oh totally. Yeah.
Dr. Patricia Halligan:
Fighting. Nobody knew what was going on, except for finally the patient discovers this on her, on her own.
Nicole Lamberson:
Yeah. And the internet, you know, once I found Matt's article, I started digging around like Christie and was just blown away. What was, what was out there and what was possible from these medications?
Dr. Patricia Halligan:
Whoa. I, I just feel oh, I don't know. My chest is tight, just listening to this story. And I, it just feels demoralizing that you, I mean, you're a young person, just fresh outta school. Everybody's got work stress, that's normal, you're learning a whole new profession and patients are not always the easiest to deal with and coworkers and you know, so wow. But boy, were you ever over medicated and yeah. Treated absolutely. In a way that provokes the mind to think about malpractice.
Nicole Lamberson:
Yeah. Yeah. I mean, I look back and I, I wonder, like, how did you think any of that was a good idea as the, those prescriptions were rolling in, you know, like six by the end, but I, I describe it sort of like Christy, you know, when she was saying about the inner dose withdrawal, it's so bad that you take something or you trust, if you don't know what it is that you need help, or you need something to help yourself because you can't stand to even live in your skin, you know? Right. So that I think is why I was just accepting the medications and I was trained medically. So I trusted doctors. I have doctors in my family. So I thought, why would they be giving me something harmful? It didn't even cross my mind that this could be a harmful path to take
Dr. Patricia Halligan:
Such massive ignorance among prescribers in this country. They don't know what they're seeing. I remember being referred to woman and they therapist that referred her, said she's suffering from anxiety and depression. And she walked into my office. She walked into the wall, as she was coming into my office, sat down, her eyes were all blurry and she was slurring her speech and she was prescribed a whole bunch of oxycodone and a whole bunch of Xanax and ambient at night. And I mean, depression, anxiety, let's get rid of the pills and see what's underneath. Right. And she was, she was a normal individual high functioning once we got rid of all the pills. I'm sorry that you endured this what a long painful journey. Right?
Nicole Lamberson:
Yeah. Thank you.
Dr. Patricia Halligan:
Would you give me a couple of adjectives to describe this path you've been walking?
Nicole Lamberson:
Yeah, sure. So one of them, you said earlier in the podcast, which was inhumane. Yeah. I mean, I think it was needless and negligent. Totally unfair. Health ruining and life devastating. And for a long time it was life threatening. I was suicidal and wasn't sure I was gonna make it. The whole thing was isolating. It was horrifying, tragic irreparable because of all the losses that I endured. It was enduring years and years and years of suffering, including the time on the pills, but also withdrawing from them. Totally exhausting. I would say, but at the same time it was enlightening. I mean, I'm certainly not the same person as I was when this started. And I'll definitely not be the same type of provider once I get better and can go back to work.
Dr. Patricia Halligan:
You ever feel like you've been chosen on this planet to do a specific job?
Nicole Lamberson:
Mm, I don't know. <Laugh>, I don't know. It's that deep. I mean, I feel like I have to do something. Yes. But I don't know if there's any like purpose, you know, I'll make purpose of it for
Dr. Patricia Halligan:
Sure. That's, that's for sure. And you're making purpose of it. And, and so is Dr. Huff and that's so admirable to take suffering and turn it into a meaningful existence that benefits other people. I have so much admiration for you guys. It's just, it's amazing. But yeah, I mean, this is not the path that anybody would choose and you both speak about, you know, years that you can't get back and totally unfair. And you trust prescribers. And these are not medications that I've actually prescribed in my whole career, unless I'm taking somebody off alcohol or, you know, using a Valium taper to take somebody off benzodiazepines, just because I've seen stories like you know, your own over and over and over and over, this is not a small problem. This is an epidemic in this country. And hundreds of thousands of people affected around the world. there were 300,000 adverse reports in the benzodiazepine report done by the FDA.
Nicole Lamberson:
ID. I think somebody from the Alliance for benzo best practices counted and came up with 300,000 reports
Dr. Patricia Halligan:
And that's, that's only their reported ones and that's only in the United States. Right,
Dr. Christy Huff:
Right, right. Just the United States.
Dr. Patricia Halligan:
Yeah. I mean, I didn't even know I could report benzodiazepine harm until I read it on your website. So, you know, add a couple extra hundred in there, you know? So Nicole, the, I guess you went to a detox because you were desperate to get off these benzodiazepines. Is that something you'd ever recommend? Somebody who's struggling to get off?
Nicole Lamberson:
That's a hard, no, <laugh>, I mean maybe if, you know, it's a rare, rare case of a paradoxical reaction or some, you know, extreme, extreme case, and there's just no other avenue, but most of the time, no. I would recommend people, you know, getting as stable as possible. And that might mean, you know, up dosing a little bit, if you're in severe, severe tolerance or spacing the benzo better or, you know, switching to a long acting benzodiazepine like Valium, like Christie did just to get yourself, you know, as stable as possible. And then, you know, the recommendation is a really slow symptom and patient guided taper.
Dr. Patricia Halligan:
And you were in a detox for how long?
Nicole Lamberson:
Well, I stayed for the full 30 days because mm-hmm, <affirmative>, they, they, I mean, everybody else, it's kind of sad. Everybody else in there was like graduating to, they had like tears of who was moving up in their healing and you could move off campus and all that. But I, I like never graduated to anything because I was so, so sick and I was actually just getting worse in there. And they were AC trying new medications and things, and I was having severe reactions to everything. At one point they gave me more hysterical and I busted my head open on the concrete floor and was sent to the emergency room for hysterical overdose.
Dr. Patricia Halligan:
Oh No.
Nicole Lamberson:
Oh yeah. I just was incredibly sick in that place.
Dr. Patricia Halligan:
Well, they, they should just have told you that it's inhumane to take somebody off that much of a benzodiazepine that you'd been on for such a long term in such a short period of time, they took, they took your money. They took your time. And so this was a lot of intense suffering and probably contributed to your protracted severe withdrawal.
Nicole Lamberson:
Oh, I'm, I'm certain of it. Yeah. I mean, the, the shock to my nervous system was so, so severe. I developed a, I mean, I paced until my feet bled. I was acutely suicidal. I was hysterical. My family had no idea what to do. I mean, they just discharged me after 30 days because that's, you know, the standard your insurance will pay for however much, or they charge you for whatever and then send you home. And then it was on my family to take care of me. And I was in, I mean, horrific shape begging to go to the emergency room every five minutes threatening to kill myself constantly because it was just intolerable suffering.
Dr. Patricia Halligan:
I remember an 18 year old that someone gave me to take care of a couple of years ago. And she had been prescribed Klonopin from the age of 16. She was like a 16 year old kid who had a bad breakup with a boyfriend, a straight, a student, normal kid, a little bit of breakup anxiety. And this child psychiatrist put her on Klonopin. And by the time I got her, when she was 18, she was having panic attacks. She couldn't sleep, she was massively depressed. She was cutting herself, suicidal. I sent her to a rehab in Florida that took care of her for one whole solid year. And they did a long, slow Valium taper. that's super rare.
I have parents calling me saying, I wanna send my 23 year old son to a rehab. We have to get him off this. You know, he's got a combination of Adderall and Klonopin. He's been on it for years, you know, let's just get rid of it. we'll pay anything. And the truth of the matter is I agree with you. There's no detox that's gonna be helpful because it sounds like when you left the detox, you felt like you failed it. This was not a success.
Nicole Lamberson:
Oh, not at all. And I actually wound up back on benzos anyways. So it was like just taking, you know, thousands of dollars and flushing it down the toilet because then I had to reinstate and I found a psychiatrist like Christie did, who didn't really know, but she was willing to learn. And I taught her, I brought the Ashton manual and then we, you know, reinstated me and did a taper after that, which I, the damage to my nervous system was pretty much already inflicted. I could only get, but so much stability from reinstating the benzodiazepine, but it was enough to where I, I felt like I could still stay alive essentially
Dr. Patricia Halligan:
With the two of you are certainly resilient. I mean, you're hanging on by the skin of your teeth and when it certainly was dark for a long, long, long time. Right. And yeah. What now, what would you both questions for, for both of you here? What would you say to the new prescriber fresh outta school, whether it's a nurse practitioner, a physician assistant, or a physician regarding benzodiazepines and Z drugs?
Dr. Christy Huff:
Sure. So I'll start. So I would say first off, if you're thinking about prescribing this to a patient, because of the serious risk, please look for alternatives. Especially non-pharmacologic options because you know, our first job is to do no harm. And then it, you know, if you do need to prescribe a benzodiazepine, we really wanna keep these prescriptions on a short, short term basis, meaning less than two to four weeks, or preferably just intermittent use like a one time dose for flying or for, to stop an acute panic attack. And then we really need to make sure the patient is getting full, informed consent about the risk of these medications. And I would even suggest written consent. I feel so strongly about this, that I authored a consent form that's available on the BIC website that can be used in clinical practice. And, you know, and now that we have the FDA box warning, we can encourage patients to read the information from the FDA as well.
Dr. Patricia Halligan:
Oh, I love that. So on the benzo information coalition website, you've got an informed consent form.
Dr. Christy Huff:
Yes, we do. It's on our resources page and it's in printable form.
Dr. Patricia Halligan:
Okay. Oh, that's wonderful. And yeah. So yeah. Try your hardest to get the patient to cognitive behavioral therapist or a, you know, a D B T therapist or some kind of psychodynamic talk therapy or write anything, but just write a prescription and get the person out of your office.
Dr. Christy Huff:
Yeah. Yeah. I just, I don't think pill should be the, the first slim when we have so many other options.
Dr. Patricia Halligan:
Absolutely. what would you say to someone out there who's saying I'm having trouble finding a physician? My own primary care doc will not taper me with Valium. He won't do a long slow taper. He doesn't, he says he doesn't know anything about it. And I can't find a psychiatrist to work with me. What do you say to somebody who's wanting to get off these drugs and can't seem to find anyone to help them?
Dr. Christy Huff:
Well, that's, that's tough. I would say that you need to be persistent in looking for a doctor that can collaborate with you because that doctor probably is gonna be out there and it doesn't necessarily need to be somebody that's completely educated on benzos. It just needs to be somebody that can you know, is willing to listen to you and believe you, and collaborate with you on a long, slow taper. We do have on our website, a list of doctors, we call them benzo wise or benzo cooperative people that other patients have said have been able to help with a long, slow taper. So that's a, you know, another resource that we have.
Dr. Patricia Halligan:
I love that advice. Keep looking until you find that person because that person's out there and I'll tell you something. I remember I was not an expert at taking people off benzodiazepines. The first time I did it, I got a copy of the Ashton manual and I read it like a cookbook. And, you know, it's like, okay, two milligrams of Klonopin is 40 milligrams of Valium. Right. And it's like, okay, go down by 10% per month. And this equals, you know, and the patient will come in the office and say, well, what are we doing? I'm really anxious. I'm like, don't worry. I got this. You know, but it's the first time I've ever done it. So anybody can do it. I mean, Heather, Ashton has made it very easy.
Nicole Lamberson:
Yeah, I'll just add to that. You know, it might not be a very popular comment, but you don't have to have a doctor. I mean, other than to prescribe the medication, there are people who just searched and searched and couldn't find anybody. And they didn't trust that if they told their current physician, they were tapering that they wouldn't, you know, cut them off. So they just pretended to still be taking the medication, but they were highly motivated to get off. And they were self taught mm-hmm <affirmative> and they, they did it at home. I mean, most patients are at home, you know, doing this on their own. You're just lucky if you have a good doctor, who's in your corner too.
Dr. Patricia Halligan:
And I don't object to that. Absolutely. it's better than them checking themselves into a detox and spending a lot of money for something that's gonna fail or result in, you know damage to the central nervous system. Yeah. Yeah. I mean, you've got your own withdrawal website, right? Nicole.
Nicole Lamberson:
Oh I co-founded the withdrawal project. That's cool. You can find it. Yeah. It's at withdrawal dot the inter compass.org, I think, or do wonder, wonder, I'm sorry. I can't remember.
Dr. Patricia Halligan:
Right. So yeah. Patients are learning how to do this because doctors aren't willing, or they're not educated in this. And I know that that's true because I have doctors, psychiatrists and primary care docs calling me all the time saying I've got somebody who's been taking years and years of Quine, Xanax, advan, can you take this person off my hands or tell me how to do it. I have colleagues, friends of mine, who'll say, help me with this. Give me a taper plan who, you know, they psychiatrists who wanna work with their own patients, but yeah, they really are looking for some kind of guidance. you know? So I love the articles that you both write on tips to help listeners through benzodiazepine withdrawal. So say you've got somebody right now and they're doing a long, slow Valium taper, and they're suffering from anxiety and restlessness and their depressed and their memory is still not, it's still foggy and they've got cognitive impairment and they're feeling like, wow, this is taking a long time. Any words of wisdom or any tips from either one of you guys?
Dr. Christy Huff:
Yeah. So I have some tips. I think the big thing to have is patience because this is going to get better over time. It just takes a long time. So you really just have to have the patience to get through it. But, and then as far as getting through it, I think developing coping skills is really important to deal with the symptoms and everybody's gonna be different as far as how best to manage the symptoms. And it just depends on what symptoms you're experiencing as well. But I know for me, personally, distraction was a great technique that I used to just take my mind off the symptoms. I mean, I would just sit and watch Netflix for hours and my really bad days. And it just took my mind off of it. And deep breathing was helpful sometimes. And then just really managing my overall stress level cuz cuz stress only made the symptoms worse. And then I think having some level of support as well finding other people that are going through this I, I found some friends in the online support forums and we were at similar stages in our taper and we were able to, you know, just talk each other through it. I, I still keep in touch with some of those people.
Dr. Patricia Halligan:
I love that. So distract your mind. How about you Nicole?
Nicole Lamberson:
Yeah, I would agree with everything Christy said for sure. I mean I used all those coping techniques as well. I would say acceptance was huge for me. Just that I, you know, I was strongly motivated. I wanted off of these things. And so I just had to accept that this was part of the way to get there. I did some very, you know, general yoga techniques. When I got strong enough physically, I started walking a lot. You know, there was a lot, many years I couldn't even do that. Like EPSO baths, although some people might say that they're scared of the EPSO, which, you know, people can have reactions to all kinds of things when they're nervous system is destabilized mm-hmm <affirmative> so be careful about those kinds of things having a purpose. So that's why I got involved in the awareness and activism, but you know, take your time and you know, don't, you know, care for yourself and rest as much as you can put yourself first and then, you know, just do whatever you, whatever you can to survive. I mean, for those who are suffering really, really bad at my worst, I just like showered 10 times a day and laid on the floor naked in front of a box fan and just didn't kill myself. So, you know, whatever you have to do,
Dr. Patricia Halligan:
That's wonderful advice. And it puts in perspective it's a one day at a time thing for sure. And acceptance radical acceptance. So it's radical acceptance in that you say, okay this is the worst possible thing that could ever happen to me. I didn't want this, I didn't deserve this and it's gonna maybe take years and I have to give up my job. And I you know, I feel afraid all the time and I've lost years, but I'm gonna radically accept it. And that alone decreases the suffering on some level, doesn't it?
Nicole Lamberson:
Yeah, because I feel like the path of coming off, at least there was hope that I could be well again, but the path of staying on, if I chose that was just a dead end. I mean, I was so sick on the pills. And so I had to accept, like you said, I'm choosing this path because there's hope in that direction, but I have to get through the worst suffering to get there.
Dr. Patricia Halligan:
And what do you offer through the benzodiazepine information coalition? What does it offer somebody suffering from long term benzodiazepine prescriptions.
Dr. Christy Huff:
So our website has a ton of information about benzodiazepines you know, all sorts of stuff, their adverse effects how to taper off the medication. And it really applies to people that are already taking benzodiazepines, people that are going, wanting to come off them or in the middle of a tape or even post withdrawal. And we have an entire page of resources that we've collected, you know, guidance on benzodiazepine prescribing. We have a copy, a free copy of the Ashton manual, either PDF or Kindle form. We have that informed consent form that I talked about fleets to online and even a few handful of in person support groups. So analyst of benzo wise doctors. So we we've got a lot of information.
Dr. Patricia Halligan:
That's amazing. That's wonderful. Are there recovery groups in person in New York city that I saw for people coming off of benzodiazepines? Or did I dream that? In my mind I saw like some kind of, it's not benzodiazepine anonymous. But I wonder if there's an in person support group in New York city. Did I see something like that on your website?
Dr. Christy Huff:
Yeah, I would have to go back and look, I know it there's one in Chicago for sure. Cause I know some of the people in it,
Nicole Lamberson:
I think the New York one is new. A lot of times what happens is the, the, the survivors will start a group on their own and they'll put it on. Oh, what is that website, Christie where
Dr. Christy Huff:
You it's a warm network I believe.
Nicole Lamberson:
Yeah. or they advertised it at one of the popular like event
Dr. Patricia Halligan:
Oh, right.
Nicole Lamberson:
Places. Yeah. And then oh, meetup.com. A lot of 'em get on there. And, and so yeah, and then people find it and say, oh, my local area has a, you know, support group either in person. I know during the pandemic, they were doing a lot zoom sessions and things like that.
Dr. Patricia Halligan:
That's that must be so comforting. I bet people in their living rooms are listening to you feeling comforted by just listening to how healthy you sound and how Good your concentration is and how eloquent you sound and how thoughtful and how calm and how high functioning you both are having rebounded from this derailment. So you're just offering people a lot of hope just by listening, Nicole. I wonder, do you wanna tell us anything about "medicating normal?" I know that you promote it and market it and do a lot of podcasts for them Facebook work.
Nicole Lamberson:
Yeah, sure. I mean, if, if you guys are out there and you haven't seen the film, you should, you can go to medicating normal.com/watch where you can find all of the upcoming screenings that we're doing. And then if you go to the medicating normal Facebook page about once a week, we do interviews with different professionals and people with lived experience around not just benzodiazepines, but all psychiatric medications. And Dr. Halligan was a previous guest. So you can see her interview. We have it on medicating normal's YouTube channel.
Dr. Patricia Halligan:
And it's interesting because the stories that I watched on medicating normal I think they follow, do they follow three people, maybe four stories.
Nicole Lamberson:
It's five, I believe. Yeah.
Dr. Patricia Halligan:
Very similar to yours and Dr. Huff's the anguish and the hopelessness and the, the, the fact that the psychiatrist were telling these people that they're kind of losing their minds, you know, sort of patient shaming, right? Well, you have another mental disorder and it wasn't that at all the drugs were making them sick. So we're, we're at the point where we're gonna have to end the show. I could talk to you guys all day, but I just wanna thank you both for coming on the, the show and sharing your stories of hope and resiliency. I think you're both heroic modern day heroes. And I think this transformation of your own suffering into a life of incredible meaning that helps other people I think it's worthy of applause. So I'm super, super happy that you're both speaking up and advocating for those who can't speak for themselves. Those who are losing, losing hope and feel like they have nowhere to turn and no one to help them. So keep doing the wonderful work that you do and to the listening audience, if you, or someone that you love is suffering from long term benzodiazepine, prescription dependence or a severe protracted withdrawal have a look@benzoinfo.com and check out this very re it's a wonderful resource. So thank you all for coming and we'll see you all next week.
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