Surviving Benzodiazepine Protracted Withdrawal After Iatrogenic Injury From Benzodiazepines Without Proper Informed Consent
On this episode, we’re exploring the world of medication withdrawal, benzodiazepine protracted withdrawal, and the difficulties associated with it. Our guest, Nicole Lamberson, shares her personal journey of surviving protracted withdrawal, involving long-term withdrawal symptoms, complicated by a lack of understanding of doctors, friends, and family. Her goal is to increase awareness of protracted withdrawal, the dangers of psych drugs, such as benzodiazepines, and the importance of informed consent between doctors and their patients. One important way that she does this is by working closely with the filmmakers of the breakthrough documentary film, Medicating Normal.
We also discuss various symptoms of protracted withdrawal, including histamine intolerance and how it might relate to some people experiencing “benzo belly.” Additionally, we delve into the lack of information on how to taper off benzodiazepines and the lack of training for doctors in this area. Finally, we explore the influence of pharmaceutical companies on medical education and the importance of doctors being fully informed before prescribing medication. Join us as we discuss all these topics and more on this illuminating episode.
To learn more about Medicating Normal, a film about iatrogenic injury and informed consent, which Nicole has helped to promote, please visit: https://medicatingnormal.com/.
Transcript:
Mark Leeds, D.O. [00:00:00]:
Nicole Lamberson, welcome to the podcast.
Nicole Lamberson [00:00:02]:
Oh, thanks, Dr. Leeds. Glad to be here.
Mark Leeds, D.O. [00:00:08]:
How are you doing? I see when you came up on you came up here on Zoom as Medicating Normal, which was a great film.
Nicole Lamberson [00:00:15]:
Oh, yeah.
Mark Leeds, D.O. [00:00:17]:
How are things going with that?
Nicole Lamberson [00:00:18]:
Yeah, I still work for the film. I use the zoom. It just automatically logs me in because we do so much, you know, zooming with people. But, yeah, we’re still, you know, in distribution trying to get the film shown. We did a huge screening in Virginia Beach that had CME that was offered by the local medical school, and there were between five and 800 people there who attended. And it was a really great event. Bob Whitaker came down, sammy Tamimi, child psychiatrist from the UK. So, yeah, we’re still trying to show the film all over to people who need to see it.
Mark Leeds, D.O. [00:01:01]:
It was a great film. I mean, it is a great film. I enjoyed watching it. I learned a lot. And every doctor should watch that. That should be required watching, because I think a lot of people don’t realize things have changed in the last couple of years. A lot of doctors are still going on what they learned decades ago. And we used to think benzodiazepines and even some of the psych drugs, the other ones were very safe. When I learned about things like Prozac, Paxils, Olaf, Lexapro, all the SSRIs, they kind of felt like antidepressants with training wheels on for, like, the primary care doctors, so we didn’t have to worry about all the dangers of mixing them with things and adverse reactions of the older drugs. So they kind of just seem, like, really easy, like, oh, yeah, here’s your Prozac. You’ll feel better. Here’s your, you know, Xanax and Valium. You know, all the benz. I always used to think they’re, like, super safe. I’m like, oh, if only, like, people like Jimi Hendrix had taken a Valium instead of whatever he took, maybe he’d be alive today. And they don’t kill people. But now we know just in the last couple of years, like the last three years, maybe they changed the labeling, and now we know these things are toxic to the brain. They cause real brain damage and suffering for people.
Nicole Lamberson [00:02:16]:
Yeah, and it’s funny you say that, because, well, that you arrived at the same place with the antidepressant stuff as well. There’s physicians that I encounter in the activism space for benzodiazepines who still say in their presentations that SSRIs are a great first line alternative to benzodiazepines, and then they just leave it at that, with no informed consent, no asterisk. Hey, by the way, these things can also cause physical dependence and severe withdrawal syndromes that can be protracted. And there’s whole communities of people, just the same as with benzodiazepines, that are suffering horribly, trying to discontinue their SSRIs and SNRIs and antidepressants. I’ve noticed some physicians and medical providers are willing to go as far as the benzodiazepines, but they sort of stop there as far as their knowledge or, I don’t know, willingness to accept that there’s problems with the other classes as well. Have you seen that?
Mark Leeds, D.O. [00:03:26]:
Yeah, definitely. It’s difficult because there’s so many of these things out there. And as we talked about before, the pharmaceutical industry is so entrenched in medical education. That’s where we learn a lot of what we know from, and it might be difficult to even see how far their reach goes in medical school. I remember this one professor said, we will not use any brand names for any drugs in my class. It was a pharmacology class. He said, we’ll use generics for everything. But I still think that their reach goes all the way through to medical school to definitely postgraduate education and residency. And then once doctors are practicing, they get a huge amount of their education from a lot of the conventions. I don’t know if they still are, but I think they are. They’re sponsored by these drug companies. That’s who’s paying for them. In fact, one of the really good ones, PrimaD, I don’t know that it’s good. They have some great keynote speakers and it’s a huge big event and it’s put on by Harvard University, but it’s either free or low cost. I’ve been invited to it free, and I think it’s hugely subsidized by drug companies. They have these incredible pavilions and the really nice ones, like on the big open floor, like where you go to look at the different drug companies. And I’m sure you’ve probably seen these kind of things that some of them have really plush carpet, and you can tell there’s memory foam under them and they’re giving you free gifts and promoting whatever drug. And maybe some of these drugs are good and useful, but like you said, informed consent. If you look at the list of side effects and adverse reactions and I think doctors sometimes read through, they look at it quickly, they’re like, wow, that’s a lot of small print. Let me just go with what the drug rep said, that we’ve never seen any of these problems and it’s pretty safe, but we all really need to read that whole list and take it all in.
Nicole Lamberson [00:05:17]:
Yeah. I think it was Peter Gocha who said one of the clinical pharmacologists out in Canada, dr. Jim Wright, that I’m a huge fan of, basically said we should take no medications. That should be our goal or as little as possible. Really only use medications when you absolutely have to and you’ve weighed all other options and you’ve tried other things that are safer. They should be our last resort. But I think our societal type thinking now is like, oh, there’s just something for everything. We just run to the doctor and expect a pill. I know. I mean, that’s how I wound up in the mess that I wound up in. So I think we need to really reframe our thinking. And I talked to a friend the other day in Europe. He’s a survivor of psychiatric medications and he said they’re really moving towards social prescribing. Like you come in and you’re having something difficult and it’s like, well, let’s talk about what your friendships are like or maybe you need to plan a dinner out with your closest buddies or you need to start exercising more. And those types of things which you never hear about when you go out seeking support from your physician for these things that are just part of the human condition, really.
Mark Leeds, D.O. [00:06:46]:
Yeah. That’s one thing I’ve been looking at recently and trying to do some podcast episodes on our therapies where there’s not really any downside, there’s no medication or drug or risk relatively. One of them was aromatherapy. I had no idea how deep that went of the capabilities and the richness of what can be done. And somebody might hear, oh, aromatherapy smells. Yeah, that’s great. But it’s a real thing and if it’s done properly by someone with the right training, it can have a real effect, a lasting effect and, and and a really beneficial effect. And then there’s one I just did was dance movement therapy and that just seemed incredible, just the idea of helping people to move and get trauma out and relieve stored trauma and to connect with their spirituality. And this is a therapy that there’s no drug involved, there’s no risk. I mean, other they could bump into someone by accident moving around, but that doesn’t really happen. But yeah, it’s incredible that there’s actually good therapies. There’s sound therapy, binaural beat therapy, which can really help a person. It’s proven to help people with anxiety and relaxation. But yeah, sometimes I feel like when I talk to a patient or I do a consultation and I bring up those kinds of therapy, even with people who are iatrogenically injured by benzodiazpines, I think there’s still a reflexive response to go to the drug therapy. Like what’s? Something I can take? Yeah, I know, yeah, sound therapy, movement therapy, get it, go outside and walk and get some sunlight in your eyes and whatever and take a walk in the fresh air. That all sounds great, but prescribe me something or recommend a supplement. But those things are real. They really do help.
Nicole Lamberson [00:08:32]:
Yeah, it’s true. I mean, I say all the time if I would have done all the stuff that I was forced to do to survive psychiatric drug withdrawal before I took medication, I probably wouldn’t have needed it. I used to play softball when I was in school and basketball. And then you get out of school and you start a career and life gets busy and you sort of get away from those kinds of things. And I feel like if I would have been more in tune with exercise and walking and taking better care of my body and that kind of stuff. Like yoga I started doing in psych drug withdrawal and nothing crazy. I’m not in these intense poses. Yoga can get pretty intense. Just the relaxation type, yen or Restorative, even in fluorid benzo withdrawal could put me to sleep in some instances. I could get myself to a place of that much relaxation. And going for long walks once I was strong enough in my withdrawal, really does give you some kind of good mood chemical when you’re doing it. And after, I notice just being outside and how much better I feel in the process and when I get home. So they do work.
Mark Leeds, D.O. [00:09:56]:
Yeah, definitely. And it’s true, though, that there is this thing in the medical field. At a certain age, they expect people to be on medications. It’s like a normal thing, even. I’m thinking of cholesterol medication, the statins. For a while, they were pushing them as saying we should all be on them. That should be like, everyone should take an aspirin Lipitor or something similar and just to protect us all from this stroke that might happen or whatever. I went from my first colonoscopy, I think, last year, and they were kind of surprised. What medications do you take? I’m like, Well, I don’t take anything. What do you mean you don’t take anything? How are you like, 53 and not taking any medications? Really? It’s partly because I’m not a good patient. Like, I’m just not good at taking things, you know, like, I’ll just forget if and you know, like, I actually did try taking cholesterol medication every day, thinking it’s going to keep me protect me from stuff happening, and I just couldn’t keep up with it. Which I guess is maybe a good thing to have to not be a good medication taker.
Nicole Lamberson [00:10:59]:
Well, there’s some bad stuff out about those statins and stuff too. But yeah, I get the same thing. I go to the doctor now because I was injured by psychiatric drugs I’ve seen behind the curtain. I’m very cautious about what I put into my body and that the nurses, when they’re checking you in, are like, so what are your drugs? And you have nothing. And they’re like nothing. They’re so shocked because it’s just not the norm.
Mark Leeds, D.O. [00:11:27]:
Yeah, definitely. So that being said, there are some supplements for people in protracted withdrawal. Hopefully there’s some medications and supplements that might help some people. And I know that it’s very difficult, I think when someone’s in protracted withdrawal, anyone can react to anything. There’s no two cases that are the same and something that worked for three, four or five people in a row. And you’re like, wow, I finally found something. This one’s really going to help everybody. And then the next person has a reaction to it and it’s like, well, okay, back to the drawing board. I thought I had this figured out, and there’s just no definite one size fits all. And especially when you recommend a medication or a supplement. And I think we’re all trying to push forward and find new things. There’s some things that I think might help and there’s some things other people think could help, but there just hasn’t been the research yet. And nobody wants to be the guinea pig and try something that may or may not work. Now, you had mentioned before we started Fenrigan. Can you tell, tell me more about how that might be helpful.
Nicole Lamberson [00:12:30]:
Yeah, so I just stumbled upon, upon it kind of accidentally because I had like a year ago, severe food poisoning and being in psychiatric drug withdrawal, benzo withdrawal is bad enough, add food poisoning on top. And it just pushed me the point where I was like, I literally want to die. I can’t take all of this at once. So I got a prescription for finergan and like I said, I’m not somebody who takes things easily, but that was like a moment of desperation. And I got the 12.5 milligram dose, which is the smallest, because that’s another thing I’ve learned along this journey, is a lot of times we’ll start people on doses that are way too high. You can sometimes take half of what the recommended dose is and still have a really good response from it. So I took twelve and a half milligrams that time and it did help a lot with the nausea, but I noticed that it calmed me down quite a bit and that I could sleep. And I felt relaxed. So I was like, okay. Well, I didn’t think much more about it, though, because really, in my mind I was framing it around just this nausea event or whatever. And I still had the bottle of Finnegan a year later. And last week I got Norovirus, which, if anyone’s had that my goodness, I’m so sorry. It’s awful. But it was sort of the same situation, just sort of driven to the brink of panic and like, I can’t feel this way anymore. So this time I took half. So half of the twelve and a half and it was the same. I calmed down, I felt less panic, I was able to sleep. And one adverse effect I did notice because of my withdrawal, I’m very prone to DPDR, dissociation, cognitive fog, so it did worsen that a bit, but just for a short window of time and then it faded off. But anyways, long story short, so then I keep in touch with a lot of psychiatrists and stuff in this critical psychiatry space who are seeing patients in withdrawal on a regular basis, and I just text one of them and said, hey, just thinking out loud, but this Finnegan pretty much helped. And he wrote back and said, yeah, me and my psychiatrist partner that I work with, it’s becoming our number one used drug for psychiatric type symptoms. Obviously they don’t use it long term, just sort of a short term rescue medication, because you did say it can cause physical dependence and withdrawal. So that was just interesting to me. Like, maybe this is, like another little tool in the toolbox for people in a severe state if you just need a break or something. Not to say it does have a list of side effects and things that it can cause that are pretty scary, like the extra pyramidal stuff. And I don’t know how common that is or if you have to be taking it kind of longer term for that to happen. You might know more about that.
Mark Leeds, D.O. [00:15:42]:
Yeah, I’m not sure about how serious the risk would be of that, but it is interesting. Did you get it as a liquid, like the cough syrup form of it or a tablet or capsule?
Nicole Lamberson [00:15:55]:
Tablet, yeah, I had the tablet.
Mark Leeds, D.O. [00:15:57]:
Okay. But yeah, anything that’s available as a liquid that makes it possible to take very small dosages, you can measure it out with an oral syringe, and it can be taken in a fraction of the regular dosage. So that’s good.
Nicole Lamberson [00:16:12]:
Yeah, well, and I also talked to another friend after that who’s in the withdrawal support community, and she has autism, so she’s kind of prone to these events of being upset. But she’s also in withdrawal too, and she lives over in Europe. And she said, oh, whenever I was in crisis, that’s what they would send me home with was Finnegan. So I just had no idea it was used for psychiatric type stuff. And it was just kind of coincidence that I took it for nausea. And I’m like, this kind of worked in the moment.
Mark Leeds, D.O. [00:16:47]:
Anyways, what did it relieve as far as the protracted withdrawal symptoms? What did it help with?
Nicole Lamberson [00:16:54]:
Yeah, so I didn’t feel like normal. Obviously it didn’t reverse the withdrawal or anything and make me feel like, oh, I’m healed. It was more of just like a cover, sort of so sedation, sleep, some panic relief, anxiety relief, just like a calm feeling of like, I got a break from it for a little bit, if that makes sense.
Mark Leeds, D.O. [00:17:18]:
Okay. Yeah, it’s definitely good to know. The more tools we can put in this big empty toolbox that we have, the better.
Nicole Lamberson [00:17:28]:
I mean, you do feel like you are kind of drugged, and it’s a sedative. It makes you feel like that. So it’s not like you feel great, like you’re alert and awake and you’re healed and all of that. It does have this sedative type sensation, but when you’re in severe panic or anxiety and just fight or flight, that’s kind of welcomed sometimes when you just need an emergency break from it or something.
Mark Leeds, D.O. [00:17:55]:
Yeah. And I think I might have mentioned to you, we tried with a patient who was in pretty bad protracted withdrawal who had stopped benzos a long time ago, almost a year up to that point, and was still suffering with really severe symptoms and part of it was described as pain. A lot of people will describe pain, but not in any specific area, just kind of like an inner pain that’s hard to describe. She went to the Er and said, this pain is unbearable. And it seemed inhumane. They wouldn’t do anything for the pain. So we tried a very low dose of buprenorphine, which is an opioid that we use for treating opioid use disorder dependence and very, very low dose. And she actually had what seemed like kind of a reprieve from the withdrawal, almost like for half a day she was back to normal, like making herself a sandwich or something and walking around smiling, almost completely back to normal. But that was just one. The next day, she seemed to have developed a tolerance where there was just no way to get that effect back. And then she did see a pain management doctor that put her on a higher dosage and it just never came back again. It was like a one time thing, so we thought we had discovered something and then again back to the drawing board. That’s not really going to be a long term solution. Plus, I mean, if someone were to take buprenorphine long term beyond a few weeks, that’s another dependence that they’ll develop.
Nicole Lamberson [00:19:24]:
That’s the problem, isn’t it? Maybe some people are suffering so bad they don’t care, but they’ll take something every day just because it’s that bad. And you can’t fault them for that. Everybody has a different level of what they can tolerate. But for me, that was the scary thing. I suffered all this time and embarked on this journey to get off of drugs. The last thing I want to do is get myself physically dependent on something else again. And I think, from what I’ve noticed in my observations, just anecdotally with people going through withdrawal syndromes from benzos and antidepressants and other psychiatric medications as sort of the kindling concept seems to apply to other drugs too. It’s almost like once you’ve pissed off the nervous system and put it into this withdrawal, if you become physically dependent on something else, it’s like that’s hard to get off of or that kind of starts up the withdrawal syndrome again each time you try to come off of something else. And so for me, it was just this fear of, like, well, I might feel better in the moment and then I’m physically dependent on this new thing. But what happens when I try to go taper that? Even if I do it slowly, it could be excruciating, it could kick up my withdrawal again and then I’m back at square one.
Mark Leeds, D.O. [00:20:47]:
Yeah, that’s a good point. It’s easy for a doctor to think, well, opioid dependence and withdrawal is bad, but not nearly as bad as benzo withdraw and tapering. But a person who’s already been through that and protracted withdrawal from benzos might have a worse experience tapering off of opioids. So you’re right. It wouldn’t be a good idea to allow someone to become dependent on something else, if at all possible, to avoid it.
Nicole Lamberson [00:21:15]:
Yeah, I think just if people can get away with reprieve, just sort of like, bursts if you have to take something and just sort of spare your nervous system. Becoming physically dependent on something, it’s ideal. But like you said, everybody’s different. And Finnegan, for me, may have worked in a rescue situation like that to make me feel some relief, and somebody else may have a horrible response to it. So that’s part of the tricky part of all of this.
Mark Leeds, D.O. [00:21:46]:
Yeah. Did you ever have issues with histamine sensitivity?
Nicole Lamberson [00:21:52]:
Not that I know of, but I don’t know that I ever really paid attention to sort of I hear people say that in the withdrawal community all the time, like, oh, I’m having histamine sensitivity, or they’re eating a low histamine diet and that kind of thing. But I don’t know how they determine that or sort of narrow it down.
Mark Leeds, D.O. [00:22:13]:
To I’ve seen a couple of really severe cases of it, and sometimes it can manifest as intestinal discomfort, which could be I think maybe the benzo belly thing could be related to the histamine intolerance. Or at least some people who think they have benzo belly might have histamine intolerance. But I’ve seen some really clear cut cases of it where a person develops a really severe allergic reaction. And early on I thought maybe it is an allergy to environmental things. And I recommend, like, an air filter and cleaning the pillows and special pillowcases and all these things for environmental allergies. Keeping the pets out of the room, which isn’t always a good thing because animals a dog or a cat might be really comforting. And now you tell the person, don’t let the animal in your room anymore. And it turned out that working with people further, that when they have this histamine intolerance, it’s really food related. And some foods contain histamine. Some, I guess, will stimulate the release of histamine. And then the treatment. Seems to me there’s a variety of things that might help because you can’t really avoid all these foods because it covers almost everything healthy and everything that people want to eat, but they can avoid them as much as possible. And then there’s, like, the enzyme Dao that can help and probiotics and that’s come up with patients. Recently, someone I spoke with, they were questioning the probiotic. They’re like, well, aren’t there certain probiotics that people in protracted withdrawal shouldn’t take? And there can be sensitivity even to the dao enzyme if you take too much of it or the wrong one. It’s really tricky. But, yeah, the histamine thing is definitely real, and it’s something to consider.
Nicole Lamberson [00:24:04]:
Yeah. I mean, for a long time I was so messed up that it was like everything was wrong. So it was like, is this from this or my food? Or if I would eat, I would feel instantly worse. Like, all my symptoms went crazy in the beginning, just from any kind of food, it didn’t matter. And then, like, smells and cleaning products and that kind of stuff. And I found it interesting. I interviewed a guy that specializes in neurotoxicity from all kinds of agents, not just medications, but mold and anything essentially in the environment that you could become neurotoxic from exposure. And he said it doesn’t matter the agent essentially that everyone he encounters or not everyone, but many people that he encounters with neurotoxicity and he would formally diagnose with neurotoxicity has this presentation of sensitivity to all kinds of things that they were never bothered by before. Smells and chemicals and soaps and foods and that kind of thing. He said it’s very common presentation.
Mark Leeds, D.O. [00:25:25]:
Oh, that’s interesting. That might be something to look into further the people that have been injured, that have had brain injury from other kinds of toxic exposures and see how they’re being treated and what works for them. But yeah, that’s definitely really interesting.
Nicole Lamberson [00:25:47]:
I will say the longer I’m away from the drugs, like, as I’m further out into Protracted, I feel like I’m tolerating stuff better than I did in the worst years of it. So it’s like it almost fades or you start to like foods don’t really do that to me anymore. I’m much less sensitive, I think, and I can take, like I’ve taken antibiotics and stuff like that without having any reactions. Knock on wood. Where in the very beginning, I think I would have been having a much harder time.
Mark Leeds, D.O. [00:26:25]:
Yeah. Did you ever have acathesia at any point?
Nicole Lamberson [00:26:30]:
Oh, yeah. That’s why I reinstated a benzo. Initially, I was cold turkeyed in a detox center from two benzos, a Z drug, and then I was also on Rimaron, Saraquil, and Adderall, so all six of those at the same time when I checked into the detox center. And of course, they only rip you off of the ones that they deem addictive. They leave you on the others, and then they start adding new stuff that they don’t think is a problem, even though it causes physical dependence and withdrawal just the same. They try to put you on SSRIs or things like that. But, yeah, I had severe, severe anesthesia after that detox. I mean, I paced until my feet bled and was hysterical with suffering. And so I lasted four months. I had a suicide attempt because I just could not go on in that state anymore. And then I found a psychiatrist who put me back on benzodiazepines for like, an 18 month titration off of them. And it did sort of stop the acathesia enough where I could live with the way that I felt and hang on.
Mark Leeds, D.O. [00:27:52]:
How long did the acathesia last again?
Nicole Lamberson [00:27:56]:
I mean, the severe, severe stuff where I was, like, pacing and begging to go to the hospital every day was four months until I went back on the bed.
Mark Leeds, D.O. [00:28:06]:
You didn’t have it again after you reinstated and tapered?
Nicole Lamberson [00:28:09]:
Gradually I did at a low level, if that makes sense. I felt like it was always kind of just under the surface, but it wasn’t like when I had it before I reinstated, it was just front and center. I mean, all I did was pace and scream and beg for help once I was tapering and off. It was like it was sort of like living inside of me, but it was just there. And the only way it would come out is if I was made to be super stressed or super panicked or something. Then it would come back and I would feel that same, like, type of feeling, but if I was calm, it wasn’t a problem.
Mark Leeds, D.O. [00:28:54]:
I know some people that go through this, they become activists in the field of really being angry about what happened to them, angry at the doctors in the hospitals, and maybe being tapered too quickly taken off cold turkey. And no matter how bad the suffering is, they’ll say, Never again. Never again will I touch a benzo, will I take another one. If a doctor even says the word, they’re evil. I don’t even want to hear the word. But do you think that maybe there’s people that should consider reinstating and doing a very gradual taper if they’re really suffering?
Nicole Lamberson [00:29:26]:
Oh, yeah. I mean, if I would have known at the time of my detox what I know now, I would have reinstated immediately, and I would have reinstated to the same dose that I had been ripped off of. I think one of the biggest mistakes I made is that I didn’t know what the hell to do. I wasn’t as educated as I am now, and so I let my doctor put me back on. I think it was like one eight or one quarter of what I came off of, and that doesn’t work. I mean, your brain remembers what you were taking just before. So if it were that easy, why would somebody do, like, a three year taper from 20 milligrams of something if they could just lop it off and then only reinstate five milligrams and have a much shorter taper? You know what I mean? Like, you have to sort of give it back, at least close to what you were on to begin with in order to stabilize and get full symptom relief. So, yeah, I think there are people who there’s this sort of tough man stuff that goes on in the withdrawal support group sometimes. Like, just stick it out. You’ll heal, everybody heals. And we set people up for Protracted syndromes and severe suffering way more than I think some people have to be. And they could have gone back on, got stable, and had a pretty good taper. That said, there are people who, for whatever reason, I don’t know if you just rock the. Nervous system so hard when you cold turkey that they try to go back on and it either doesn’t work fully, they just get, like, partial relief, or sometimes they reinstate and they feel worse. But that seems to be like the rare type of report. Most people can go back on and feel better, at least mostly better and taper, and they should do it as quickly as possible after making a huge dose reduction or cold turkeying so that they can not sit in a bad withdrawal state for a long period of time and damage the nervous system.
Mark Leeds, D.O. [00:31:46]:
Yeah, one thing I’ve been thinking about is when 911 happened, they were looking into all these different things that happened. And one thing that they found highly suspicious after the fact was how these guys trained to fly planes but not to land. They’re like, well, we don’t want to learn about how to land a plane. We just want to learn how to take off and fly. Landing is not really important to us, and that seems crazy. And I was like, how did they not report that? That should have been a big, huge red flag. Yet the entire medical industry, the healthcare industry, maybe that should be a big, giant red flag that doctors are not taught how to land the plane, how to get people off the medication, how to taper gradually what needs to be tapered. Pharmaceutical companies don’t teach doctors. Each medication should come with tapering instructions and a tapering mechanism. Here’s like a taper pack or here’s a special we don’t give this to everybody, but here’s special graduated dosages or a liquid form. Same thing with addiction treatment. With buprenorphine, you basically have really two dosages that are available for buprenorphine because you can’t get the twelve or the four milligram anywhere, but you have the eight and the two milligram buprenorphine. And most people, almost nobody is ready to drop off at two milligrams. They need to taper far below that, and it just doesn’t exist. And then the package says, never cut or tear break the medication. You have to take it intact. So they’re basically saying, never come off of it.
Nicole Lamberson [00:33:21]:
You’re stuck.
Mark Leeds, D.O. [00:33:22]:
Yeah. It almost does seem like some kind of medical terrorism. Where’s the tapering? Where’s the teaching? A lot of doctors, I don’t think, know that tapering should be done with the SSRIs, like all the antidepressants, and it’s like, okay, doctor, I’ve been taking Paxil. I feel a lot better. I’m done with it. What I do? It’s like, well, maybe take half the dose for a few days and you’re probably done then. They just don’t even know what to do with that. It’s not the instructions.
Nicole Lamberson [00:33:49]:
Yeah, it’s scary. And so people who are considering taking this medication need to know that ahead of time. That’s part of the informed consent. Like, hey, depending on what you’re on, by the way, it doesn’t even come in the doses you might need to get yourself off. So you’re going to have to figure that out. If you’re on these beaded ones, you may have to sit there with a little thing and count out tiny little beads. This is going to be part of your life if you want to get off of this stuff. That’s part of knowing the long plan for these drugs if you’re going to initiate them. And I think a lot of people would not take them if they knew that was the case. There is some hope, though. I mean, I’m on the patient committee right now for the FDA, put out a black box for benzodiazepines a couple of years ago, and one of the critiques of the black box is like, well, great, you’ve told everybody that there’s physical dependence and that there’s these horrible withdrawal syndromes and protracted withdrawal. We’re super grateful that that exists in the labeling now, but you basically just sort of generically said that people need to taper. Well, you didn’t provide any guidance or information on how to actually do that. So they put up a bunch of grant money recently, and the American Society of Addiction Medicine is the recipient of that grant, and it is to come up with depreciing guidelines for benzodiazepines. And they have a committee of patients who are working with the medical providers who are on the doctor side of things, and I’m on that committee along with a bunch of other benzo survivors. So, so far we’ve had one meeting and it’s going well, and I think they’re hearing us and really interested in having a collaborative type relationship as the guidelines are developed. So we’ll see how it goes. It’s going to be a couple of years before they’re out and we can see what they are.
Mark Leeds, D.O. [00:35:55]:
Yeah. What do you think of the Ashton method? Maybe it’s dated, maybe there’s better ways to do it, but it is out there, and at least it’s a good starting point to learn about it. What do you think about it?
Nicole Lamberson [00:36:10]:
Yeah, I mean, I love Heather Ashton. I think she was like the pioneer. But anytime someone does it first, I think many years later, people have perfected it and come up with new techniques that can make it easier and that kind of thing. So she really just gave us the idea and gave us the equivalences to Valium and that kind of thing, which is so important. But I think the patients went home, took that and said, okay, I’ll do it better. And we have ways that we’ve developed. Not everybody switches to Valium either. A lot of people don’t like Valium. They don’t think that they feel as good on Valium as they did on their original benzo, and so they just directly titrate off of Clonapin or Xanax. So, yeah, there’s a bunch of ways to do it, but I think the Ashton manual is a good start. Where people get in trouble is they try to follow. It like a cookbook. They think it’s like a recipe that they do one step, and a lot of times it’s the doctors. They miss the paragraph where she said very loudly, this is only a guide. Let the patient adjust as needed. I mean, that’s the biggest take home, is that the patient’s body should dictate the rate and speed of taper, not some chart that you’re following.
Mark Leeds, D.O. [00:37:40]:
Yeah. As far as other things that might be helpful, somebody mentioned in an email, they they said they they looked at my material and feel I’m not doing any biohacking, and I wasn’t sure what they meant. What is biohacking exactly? I just imagine there’s these groups of people that are trying to grow fresh vegetables and healthy meats, and they’re doing all these crazy things to maybe they’re taking psychedelics or they’re taking all kinds of supplements blended together. But have you heard of that biohacking for benzo protractor withdrawal?
Nicole Lamberson [00:38:19]:
Okay. I’m a member in some of the primal Paleo keto world, and I follow that kind of stuff because I eat that way and it makes a lot of sense to me, like looking at what our ancestors did and how we managed to evolve. And in that world, the biohacking stuff is like using blue light blocking glasses before bed when you’re on your screens and to get yourself sort of in that sleep mode or whatever, because we’re all exposed to all these lights and it messes our sleep up and that kind of thing. So I’m not sure if it goes beyond that. I don’t know.
Mark Leeds, D.O. [00:39:07]:
That’s a good idea. When you mentioned that the original blue blocker sunglasses, I love those. I mean, they just make the whole world look a lot happier and more peaceful. And the big downside is you can’t really see green lights when you’re driving, so either have to know what a green light it’s the absence of red, basically, but otherwise, yeah, that’s a good idea. Blocking the blue light. I guess some devices can filter out the blue for you, but yeah, in the diet, that’s another good point. I think some people have told me that a low carb diet helps some, and I think it helps me too. I feel less anxiety if I’m eating low carb.
Nicole Lamberson [00:39:42]:
Yeah. I interviewed Chris Palmer recently. He’s like the big keto psychiatrist out of Harvard. And yeah, I told him when I went on Keto in benzo withdrawal, I knew there was something to it because I stopped biting my fingernails for the first time in my life when I was in Ketosis, which I was like, interesting. So I must be more less anxious if I’m not doing that.
Mark Leeds, D.O. [00:40:09]:
Yeah, I don’t know if they still do it, but I know when I was a student, I saw when I did my pediatric rotation that they were using Ketogenic diet to treat seizures in children where they were resistant to other treatments. I was thinking like, seizures are, like, the worst thing. If someone is in acute benzo withdrawal, they could have a seizure. So that’s like the one thing, the thing you don’t want, like, that over excitation. I can’t even think I’m going to cut that part out. Excitation, whatever. But yeah, the brain is overstimulated, so you don’t want a seizure. But the opposite of that would be you’re on a keto diet. You’re calm, you’re relaxed. Yeah, I can imagine it would be good. And sometimes I think I forget to bring that up with people and definitely something I guess you probably have a list. Do you have a list of stuff that you go over when you talk to somebody to make sure you don’t leave something out when you’re doing, like, a consultation with someone or helping them get through protracted withdrawal?
Nicole Lamberson [00:41:15]:
No, because I don’t really do consultations. I mean, it’s more just like helping people out just from my experience or sharing my experience. But I always make sure to say, obviously, what we already discussed is what worked for me might not work for you, but you can certainly try it. It’s like we have all these anecdotal tools that somebody before you has tried, and so you can post in the forums and ask, and you’ll probably get a varied response. And then you just sort of have to make your own decision and decide, like, well, to me, going on a diet seemed like one of those low risk interventions where it was like, well, if it doesn’t work, so what? But I might lose a little bit of weight. And another good thing that I noticed with it was like the benzo belly type stuff that you were talking about really cleared up. Like, I had a lot of GI issues and the keto diet really helped that. But I eat pretty clean keto. Like, you can do junk food keto if you wanted. They have all those products and processed whatever now. And if you eat enough of that Erythritol or whatever, you’ll be on the toilet all day long. I eat, like, real food keto.
Mark Leeds, D.O. [00:42:38]:
When you say clean keto, what about things like those sausages and beef jerky? I guess they have some organic ones that don’t have stuff in them that are probably okay.
Nicole Lamberson [00:42:48]:
Yeah, I don’t buy the ones that are preserved with nitrites or whatever and have I mean, if you get like, gas station jerky, that can have a lot of sugar in it if you don’t read the ingredients. So I do get the ones that are they don’t have sugar, and I think they use, like, celery juice to preserve them or whatever, but it’s nothing fancy. They have them at Trader Joe’s. Like, Chomps is the brand that I get. Yeah, but they have other brands, like Primal something or Nick Sticks is another one. So. Yeah, I eat those.
Mark Leeds, D.O. [00:43:25]:
Yeah, I actually got the chomps one. I think I got that at Costco, like a big pack of them and they were really good. Yeah, okay. I wanted to ask you, have you tried ketamine infusions?
Nicole Lamberson [00:43:37]:
No, I haven’t.
Mark Leeds, D.O. [00:43:39]:
Yeah, that’s something some people have told me. They tried it and it didn’t help them. But then the proponents of it say that you need to do a series of them, like six of them, and then some people get upset, like, I didn’t get therapy and not all the places give therapy because the medication is supposed to have beneficial brain healing effects with or without therapy. But yeah, I’m not really sure about that because I’ve heard people with other issues, other people with mental health issues or chronic pain that said that it was the greatest thing ever for them. But I don’t know if it really has any great benefit for protracted withdrawal.
Nicole Lamberson [00:44:17]:
Yeah, I haven’t tried it. I probably never would. I told you at the beginning, before we started recording and a lot of benzo people are psych drug withdrawal. People are like this. They’re kind of scared of sort of rocking the boat too much or I’ve also been to places in my mind from withdrawal that I didn’t even know existed. And so when you start talking about things like more drugs that can make you have experiences or like these people saying like, well, what about psychedelics? And it’s like, I want to feel normal, I don’t want to have trips or that kind of thing, I’m good. After being in psych drug withdrawal, that just scares me. But at the same time I could be just completely short sighted because there are people who swear by psychedelics and there’s all this research and stuff. I watched a podcast the other day and I was like, I don’t want to slam the door on it if it could help somebody. So I think just need to learn more. But for my own purposes, I probably would be too afraid, honestly.
Mark Leeds, D.O. [00:45:27]:
Yeah, maybe it’s more of the derealization effect of takes you further from reality.
Nicole Lamberson [00:45:34]:
Yeah, and I’ve been far enough that I don’t want to go further.
Mark Leeds, D.O. [00:45:41]:
What do you think about, I guess it’s a therapy called acceptance or is it acceptance and commitment therapy. And it’s a whole field where there’s people trained in it, but it almost seems like common sense of like that accept where you are, accept your life as it is or learn to accept it. And then the commitment is a commitment to do positive action, take positive action. But I have talked to people that are really in denial. I think of that now. Their life isn’t what it used to be. Maybe they’re not the same. Just for example, I had a patient that went through COVID and he had a really bad reaction. It almost killed him. And then afterwards for a long time, he had a lot of anxiety and depression and fatigue. And this is someone that was like a highly successful, motivated person. I mean, he’s still very successful in business, but he went through a period where he really just couldn’t do anything. I remember talking to me and he said, I’m having anxiety, and I’ve never had anxiety in my life, and I’m tired, I can’t get anything done. And while he’s explaining in detail how he felt, I thought, now you’re like me. That’s how I feel all the time. But that must be really hard for someone that has never felt that way, to suddenly be confronted with that. But do you see things like that? Like, your life isn’t what it used to be, but maybe you can learn to accept it as it is?
Nicole Lamberson [00:47:03]:
Yeah, I mean, I think you have to if you’re going to go through this process and you get any level of disability from it, what choice do you have? For me, I was so sick on the drugs that the only sort of light at the end of the tunnel was that maybe I could get off of them and have a life again or health again. Staying on them just wasn’t an option. I mean, I know for some people they feel fine on their drugs, and so maybe they would not even want to embark on trying to come off. But for me, it was like, I have to get off of this stuff or I’m not going to survive. So I feel like I did have to radically accept. I think what I’ve seen is a trend sort of when the bad suffering starts and the losses start happening because you’re so ill, the initial response is rage and sort of pushing back up against it and like a temper tantrum and just normal human like, this isn’t how I planned for my life to be, and this is so unfair. But that doesn’t change anything. And so eventually, I think people just become sort of worn down by the process into acceptance, so they realize, like, I’m going to have to go through this if I want the end goal, which is being off of these medications. I remember in the beginning when I was sort of in that phase of rage and poor me, and this isn’t fair, and all my friends are having this and this, and I’ve lost everything. My dad said to me, not everybody’s guaranteed a good life. And when he said that, I hated him for it. I was pissed. I was like, what a stupid thing to say. But it’s true. I could have been in some terrible car accident. It didn’t have to be psych drug withdrawal. People suffer and lose things and go through stuff all the time where their health is not optimal and it interrupts their life. And so this is just part of my journey, and good things have come out of it too. I also hated the people who tried to sugarcoat and make everything like, oh, I’m grateful for benzo withdrawal. You’ll never hear me say that I am not grateful. This was the worst hell and it didn’t have to happen. But some good stuff has come out of it. Like, I’ve met amazing people. I have experiences that I never would have had. I’m super interested in a topic that’s sort of like my life’s work now and passion and doors have opened that I never thought I’d be working for a documentary film. Stuff comes of it, you know what I mean? So you just make the best of what you have, even though it still sucks that your health is not optimal and you’ve lost a lot.
Mark Leeds, D.O. [00:50:06]:
Yeah, definitely. And that’s always kind of a touchy thing, I think, pointing out to a patient, things could be worse. And of course they look at me as like, well, things are really bad. So easy for you to say that things could be worse. But there’s definitely some horrible things a person can go through. I know the one that always comes back to me is that ALS Lou Gehrig’s disease, where person is like and I feel terrible for anybody who listens to this, who has that being trapped in your own body and not being able to. Getting to a point where you’re in there and you can’t move or do anything and maybe you’re on life support and your loved ones don’t know what to do. And then you think about how terrifying claustrophobic that must be just to be there and not be able to move your limbs at all. Because I get claustrophobic just thinking of any enclosed space or not being able to move. But yeah, at least if someone going through this, they haven’t lost a limb and they’re able to move. They’re able to do things and accomplish things. And I know that it’s not what they would have been if it hadn’t happened. I know people are angry because they’ve been injured by the health care system that didn’t know any better and should have known better. But yeah, I think there’s always things to be grateful for.
Nicole Lamberson [00:51:25]:
Yeah. And I would say if you’re supporting someone ever not to tell them there’s people who are worse, that’s kind of annoying to hear because what you’re going through is awful, you know what I mean? And nobody wants to hear that. Like, well, you could have third degree burns all over your body. That would be terrible. But it’s like I sort of came to that on my own as part of my acceptance journey, like examining all these people around me. Not everybody’s having a great time, not everybody’s healthy. People have horrible things that they have to contend with in life. And so that was sort of my own realization. And also the most important one was I wish when I was younger that I had had more guidance and just knowledge about you get one body and one chance at this. If we were younger, and we were taught about eating properly and exercise and sleep, but I don’t know if you can get that lesson if you haven’t had the suffering to sort of bring you to that place. I almost feel like humans are so stubborn. We have to sort of be taken to the brink of something before we’re like, okay, I get it now, and we start doing the right thing. What do you think?
Mark Leeds, D.O. [00:52:51]:
I totally agree.
Nicole Lamberson [00:52:53]:
Yeah.
Mark Leeds, D.O. [00:52:54]:
And that’s good advice for me to not bring up. Things could be worse for you, because you’re right. I think people figure it out on their own.
Nicole Lamberson [00:53:02]:
Yeah. I mean, if there’s another way to say it, maybe.
Mark Leeds, D.O. [00:53:04]:
I don’t know, but I can’t imagine someone going through that for years and years and having to live with that.
Nicole Lamberson [00:53:10]:
Yeah. And also not knowing when it’s going to end or if it ever will. That’s the scariest part, too, is just the timeline of I know every person who’s protracted thinks that, what if they’re, like, the exception? What if they damage their nervous system so badly that it doesn’t ever get to the place where you connect with reality again? Or you feel normal emotions, or you can sleep. Right. But everybody’s just sort of hanging on with this blind faith, like, well, it has improved from the first five years, so hopefully the trajectory is in the right we’re moving in the right direction, and you sort of have to hang on. There’s no doctor that can tell you, absolutely, this is going to go away. You’re lucky if you can find a doctor who believes that you’re having it. Yeah. That’s also part of the torture and the timeline, not just the symptoms. Like, yeah, everything you listed totally sucks. Being dissociated for ten years sucks, but the timeline is what ruins your life. Like, give me the worst suffering ever for two years, because I can bounce back from that pretty okay. Like, I haven’t ruined everything in a two year period. But if you’re unable to work for a decade and you haven’t put money into your 401 and you didn’t get married or have kids, that’s way more devastating to your life in the long run. You know what I mean?
Mark Leeds, D.O. [00:54:51]:
Yeah, definitely. Almost sounds like being sent to prison for a long time.
Nicole Lamberson [00:54:57]:
I’ve thought about it like that. But at least they can feel connected. I mean, they’re not dissociated and they can play cards. A lot of people in severe benzo withdrawal just lay alone in bed. They can’t stand to even be around other people, really. So, yeah, it’s like prison.
Mark Leeds, D.O. [00:55:21]:
But yeah, I think it is important to have hope. I believe that the human nervous system, the brain, can overcome anything, and it and it could be actually damaged in some diffuse way of toxic reaction, causing diffuse damage to maybe the receptors or the neurons at a microscopic level. But I think the brain can adjust and accommodate and I’d like to believe there’s hope for everybody at some point.
Nicole Lamberson [00:55:50]:
Yeah, same. I mean, I try to say to myself all the time, if people were suffering so horribly and they just never got back to life, they would be all over the internet. Like, I would know them and those people just, yes, there are people who are off 14 years that I’m aware of who are still suffering, but if you get much beyond that, they’re not there. So it’s like, well, if they exist, where are they? Why aren’t they in the groups like.
Mark Leeds, D.O. [00:56:26]:
Everybody else at 14 years? Maybe someone other than yourself. They’re not probably not as bad as they were in the beginning. Like they’ve improved.
Nicole Lamberson [00:56:35]:
Yeah, they’ll all say the trajectory is towards healing. So yeah, anybody who’s super long term is way better than they were in the beginning. It’s just that they’re still suffering to the point where they’re not back to life again. They aren’t working full time, they aren’t having all the landmarks and stuff that their peers are having and that kind of stuff. But no, it’s not like it was in the acute first handful of years or whatever. I wanted to ask you, I interviewed you for the Medicating Normal YouTube channel, and somebody in the comments, I guess, sort of was unhappy that you said you hadn’t seen protracted withdrawal that much in your clinic. And I’m wondering, have you seen more of it since we last talked?
Mark Leeds, D.O. [00:57:25]:
I read those comments and it’s probably a good thing I didn’t see them live. I didn’t realize they were happening. But yeah, I did read them back and I didn’t respond really, but I think I kind of took them all in and felt bad that I said things like that or didn’t respond to certain things that people are asking. But maybe on one hand, I’m sometimes afraid to say things publicly that might imply there’s no hope. I like to think there’s hope for everybody, and I wasn’t as aware of it at that point. I think after that, in fact, it does seem like there’s things in the protracted withdrawal and the benzo withdrawal condition that I’m not aware of. And then I learn about it, and then as soon as I learn about it, it seems like everybody’s talking about it. Just like the histamine thing. Originally I didn’t understand it, and then I got to know it a lot better, learned what might work for it, and then suddenly it seemed like everybody in every form is all talking about histamines and they hadn’t been before. I probably just wasn’t tuned into it. But yeah, I think I wasn’t really tuned into protracted withdrawal so much at that point. And since then it’s definitely something I’m aware of and I’m seeing more and I think at that point I was more seeing people early on and really trying to give them hope. If you’re not completely better, you’ll be dramatically improved by this point and hopefully not giving them false hope, but hopefully at least giving them some hope helped them push forward. And I think some people were really motivated to do things and move forward. But yeah, maybe since then I’ve developed a more realistic approach and I’m definitely seeing more and becoming more aware of people that are going to be dealing with this on a much longer time scale.
Nicole Lamberson [00:59:08]:
Yeah, well, to your defense, a lot of like you said, people in this position are angry and rightfully so, but we sometimes take it out on people who are on our team. Oh, he doesn’t know everything he’s supposed to know. It’s like, well, the doctors are the ones who want to help us. They’re learning, it takes time. I mean, this is complicated and you have to really get in there and join the forums and talk to the patients and all that kind of stuff. It’s like a huge learning process to understand all of it and also protracted people. The ones I know, anyways, a lot of us don’t really go to the doctor because it’s like, what can you we’ve been doing this for so long that most of the times when we go to the doctor, they don’t believe us or they diagnose us with something stupid that we know that that’s not what it was. So it’s kind of like a waste of time or money. And also we also know that there’s not a lot can be done. So that could be why you’re not seeing a lot of protracted people, because short of taking a medication or something like that and a lot of them are like me, they don’t want a drug. So a lot of times we kind of just disappear and slip under the radar and we’re not going back to the doctor and so they don’t see that we exist. Really?
Mark Leeds, D.O. [01:00:36]:
Yeah, I’ve seen that people going through two extremes. One is they go to a doctor that doesn’t believe what they’re going through or they discount it because the doctors also don’t have a lot of time and they rush them through a brief visit and nothing really happens. Or they put them on the wrong thing, they put them on more psych drugs just to hopefully solve the problem quickly. And then the other extreme is the functional medicine doctor that does a million tests and diagnoses them with all kinds of crazy things that may or may not be real, puts them on a ton of supplements and it’s hard to say, was that stuff really helpful? And now the person thinks they have all these other things wrong with them and they’re taking huge amounts of supplements and things that may or may not be useful and doing all these labs that regular labs don’t even do. So that’s like the other extreme. But although, I don’t know, maybe we can learn from them, maybe there’s some real stuff. In there?
Nicole Lamberson [01:01:32]:
Yeah, I don’t know. I mean, it gets so expensive and then it’s just like I did that. I went to a functional medicine doctor and it’s like $200 for 45 minutes or something. And I came out with like a prescription of ten diflucan for my gut overgrowth or whatever, and I was like, I didn’t know what to do with it. Again, most of the time you meet people who have been in Protracted long enough and they’ve kind of just given up on the medical system and they’re just dealing with it, passing time on their own, taking care of their body, just waiting.
Mark Leeds, D.O. [01:02:14]:
I would definitely say that the message should be don’t give up hope, keep trying. And don’t discount the natural non medication things going outside, taking a walk, the fresh air, the sound therapy, movement therapy, like you said, yoga, which would be a form of movement therapy. And those things that seem like, oh yeah, they’re not going to work, but they do work and they do help.
Nicole Lamberson [01:02:38]:
Yeah. And friends and purpose and distraction. Those three things saved my life. Meeting people in the same boat as me that I could complain to, I could call anytime, they would answer my phone at two in the morning because they’re probably awake too, they’re in withdrawal. Distraction, because I could get out of my head and I could make myself focus on something else for a little while. And feeling purposeful. I mean, there’s nothing worse than just existing and having nothing to do or not feeling like you’re contributing in some way. So however, you can make those things happen while you’re sort of, to use the jail analogy that we talked about before serving your time in withdrawal, it’ll help.
Mark Leeds, D.O. [01:03:24]:
Yeah. Sometimes you reach a point where you’re like, maybe they put you in a minimum security prison and then you’re out on parole when you start driving again.
Nicole Lamberson [01:03:36]:
Or maybe go to lunch with a friend that feels safe or something like that. Yeah, you start getting work release.
Mark Leeds, D.O. [01:03:44]:
Yeah. Yeah, that’s a good analogy. Anyway. Nicole Lamberson. Thank you again. Thank you for joining me today.
Nicole Lamberson [01:03:53]:
Yeah, sure. Thanks for having me.
