You are currently viewing Nicole Lamberson: Surviving Benzodiazepine Protracted Withdrawal Long-term

What is it like to live through protracted benzodiazepine withdrawal?

In June 2023, I spoke with Nicole Lamberson, who survived a cold turkey stop from several psychiatric medications and has lived with protracted withdrawal for years. She now works with the documentary Medicating Normal and advocates for people injured by prescribed medications.

This is an archive episode from the show’s earlier period, though the subject could not be closer to the heart of it today. Nicole speaks from her own experience, and her account is one of the clearest I have heard.

Why do so many doctors still think these drugs are harmless?

At 1:00, I admitted what I was taught. When I learned about the newer antidepressants and the benzodiazepines, they seemed easy and safe. Unfortunately, we now know they can cause real harm and real suffering when a person tries to stop.

Nicole pointed out, at 2:15, that some physicians who speak about benzodiazepine harm still present antidepressants as a simple alternative. In her experience, those medications can also cause physical dependence and severe, lasting withdrawal, and patients deserve to hear that before they start.

At 3:26, I described how deeply the pharmaceutical industry reaches into medical education, from conferences to the drug representatives who visit offices. The small print matters. Yet, many doctors skim it and go with what the representative said.

What helps that is not a medication?

From 6:46, we talked about low-risk approaches such as movement, sunlight, walking, sound, and aromatherapy. Even people who were harmed by medication often still ask for a prescription first.

Nicole said, at 8:31, that gentle yoga and long walks helped her even in severe withdrawal. Later in the conversation, at 38:18 and 41:15, she described eating a clean, low-carbohydrate diet and finding that her digestive symptoms improved. She was careful to say it worked for her, and might not work for everyone.

Why can a person in withdrawal react to almost anything?

At 11:27, I described a pattern every clinician in this field knows. Something helps three or four people in a row, and the next person reacts badly to it. There is no one-size-fits-all answer.

Nicole explained, from 19:23, why she is so wary of anything new. Once a nervous system has been through withdrawal, becoming dependent on another drug can mean another hard taper later. In fact, I agreed that someone who has already been through protracted benzodiazepine withdrawal may have a harder time coming off something else.

We also talked, from 21:46, about histamine sensitivity. It can show up as digestive trouble or allergic reactions, and in the cases I have seen it was often food related. Nicole said her sensitivities to foods and smells eased the further out she got.

What happens when someone is taken off everything at once?

At 26:29, Nicole described being stopped cold turkey in a detox center from two benzodiazepines and a sleep medication, while other drugs were left in place or added. She developed severe akathisia and spent months pacing in desperate distress.

A psychiatrist eventually put her back on a benzodiazepine and tapered her over about 18 months. That stopped the worst of it, though she said the restlessness stayed just under the surface whenever she was stressed.

Should people who are suffering consider going back on the medication?

At 28:52, I asked her directly. Some people, after a terrible experience, will never take a benzodiazepine again no matter how much they suffer.

Nicole said that, knowing what she knows now, she would have gone back on right away, and at close to her original dose rather than a fraction of it. She also said it does not help everyone, and that some people feel worse. So, it is a decision to make carefully with a prescriber who understands withdrawal.

Why are doctors taught to take off but not to land?

At 31:48, I offered an analogy that has stayed with me. Doctors are trained to start medications but almost never to stop them. Most drugs come with no tapering instructions and no strengths small enough for the last steps, and buprenorphine’s smallest common dose is still too high for most people to stop from.

Nicole added that this belongs in informed consent. In her view, many people would not start these medications if they knew in advance what coming off might require.

At 35:55, I asked what she thinks of the Ashton Manual. She called Professor C. Heather Ashton the pioneer who gave everyone the starting point. In her view, the biggest mistake is following its charts like a recipe and missing Professor Ashton’s own instruction that the patient should set the pace.

How does a person accept a life that has changed?

From 47:02, Nicole talked about the anger that comes first, and the slow acceptance that follows. She is not grateful for withdrawal. Still, she has met remarkable people and found work she cares about.

She also gave me advice I took to heart, at 51:25. Telling someone in withdrawal that things could be worse does not help. The hardest part, she said at 53:10, is not knowing when it will end. Near the close, at 1:02:38, she named three things that kept her going: friends, purpose, and distraction.

Who is Nicole Lamberson?

Nicole Lamberson is a survivor of benzodiazepine and psychiatric drug withdrawal who works with the documentary Medicating Normal and serves as a patient voice in efforts to improve how benzodiazepines are prescribed and tapered.

What can listeners take away from this conversation?

A taper should be set by the person’s own nervous system, not by a chart or a program. And, for anyone still in protracted withdrawal, the brain is capable of healing, and the people who have been through it are proof that time matters.

How do I approach this today?

My thinking has kept developing since this conversation was recorded. Today my practice is built on one idea that runs through all of it: when the body has adapted to a substance, the safest way off is usually gradual, with the smallest steps the person’s nervous system can tolerate. Physical dependence is not addiction.

For benzodiazepines and sleep medications such as zolpidem, I follow the Ashton Manual, written by Professor C. Heather Ashton, and the Maudsley Deprescribing Guidelines. That often means a crossover to diazepam, whose long action smooths out the day, and then small reductions with holds whenever symptoms flare.

When tablets can no longer be cut small enough (I never split a tablet beyond quarters), the taper moves to a liquid so the steps stay gentle. The 2020 FDA label update for benzodiazepines now warns about dependence and withdrawal. A taper is not treatment for addiction. It is careful medicine for a body that has adapted.

Call 911 or go to an emergency department if there is a seizure, confusion or hallucinations, or thoughts of self-harm. For thoughts of suicide or any mental health crisis, you can also call or text the 988 Suicide and Crisis Lifeline.

This page is educational. It is not medical advice, and listening to the episode or reading this page does not create a doctor-patient relationship. Decisions about starting, continuing, or tapering any medication should be made with your own physician.


Full transcript

A note from Dr. Leeds: my guests speak from their own experience and expertise, and the terminology they use is their own. Whatever the topic, this show holds to one distinction: physical dependence on a prescribed medication is not addiction. This transcript is educational content, not medical advice, and nothing here creates a doctor-patient relationship.

Read the full transcript (64 minutes)

Dr. Mark Leeds [00:00] Nicole Lamberson, welcome to the podcast.

Nicole Lamberson [00:03] Oh, thanks, Dr. Leeds. Glad to be here.

Dr. Mark Leeds [00:07] So, yeah, so how are you doing? I see when you came up on, you came up here on the, on Zoom as Medicating Normal, which was a great film. Yeah, how are things going with that?

Nicole Lamberson [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, really great event. Bob Whitaker came down, Sami Timimi, child psychiatrist from the UK. Okay so yeah we’re still trying to show the film you know all over to people who need to see it

Dr. Mark Leeds [01:00] Yeah 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 should be required watching because I think a lot of people don’t don’t realize things have changed in the last couple of years you know 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. You know, we were kind of, you know, when I learned about things like Prozac, Paxil, Zoloft, Lexapro, you know, all the SSRIs, they kind of felt like antidepressants with training wheels on, you know, for like the primary care doctors, you know, 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 seemed like really easy, like, oh yeah, here’s your Prozac, you’ll feel better. Here’s your Xanax and Valium, all the benzos. I always used to think they’re super safe. I’m like, oh, if only 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 [02:15] Yeah. And it’s funny you say that because, well, that you arrived at the same place with the antidepressant stuff as well. You know, 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. Benzodiazepines and then they just like leave it at that with no informed consent no like asterisk you know 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. So it’s like some people, I’ve noticed some physicians and medical providers are like 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?

Dr. Mark Leeds [03:26] Yeah, yeah, definitely. And, you know, 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 in postgraduate education and residency. And then once doctors are practicing, they get a huge amount of their education from, you know, 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. You know, that’s who’s paying for them. In fact, one of the really good ones, Pri-Med, 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 free 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 like these incredible pavilions and the really the really nice ones like on the big open floor like where you go to look at the different drug companies you know and I’m sure you’ve probably seen these kind of things that some of them have really plushed carpet and you know you walk you can tell there’s memory foam under them and they’re giving you free gifts and promoting whatever drug and, you know, 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. You know, let me just go with what the drug rep said that, you know, 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 [05:17] Yeah. And just, I mean, I think it was Peter Gøtzsche who said, you know, well, and one of the clinical pharmacologists out in Canada, Dr. Jim Wright, that I’m a huge fan of basically said, you know, like we should take like no medications. That should be our goal, you know, and, or as little as possible, like really only use medications when you absolutely have to, and you’ve like 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 like 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 know, you come in and you’re having something difficult and it’s like, well, let’s talk about like what your friendships are like, or maybe you need to plan, you know, a dinner out with your closest buddies, or you need to start, you know, 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.

Dr. Mark Leeds [06:46] Yeah. Yeah. And 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 it’s really, you know, and it’s not, and somebody might hear, oh, aromatherapy, you know, smells, yeah, that’s great, but it’s a real thing, and if it’s done properly by, you know, someone with the right training, you know, it can have a real effect, a lasting effect, 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, like, helping people to move and get trauma out and, you know, relieve, stored trauma and to connect with their spirituality. And this is a therapy that has no, there’s no drug involved. There’s no risk. I mean, either they could like bump into someone by accident moving around, but that doesn’t really happen. But yeah, I mean, it’s incredible that there’s actually good therapies. There’s sound therapy, binaural therapy, you know, which can really help a person that’s proven to help people with anxiety and relaxation. And, 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, you know, even with people who are, who are iatrogenically injured by benzodiazepines, 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. Yeah. Sound therapy, movement therapy, get it, go outside and walk and get some sunlight, you know, in your eyes and whatever, and, you know, take a walk in the fresh air. That all sounds great, but, you know, prescribe me something. I recommend a supplement. I’m like, well, you know, but those things are real. They really do help.

Nicole Lamberson [08:31] Yeah, it’s true. I mean, I say all the time, like, 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. Like, you know, I used to play softball when I was in school and basketball. And then, you know, 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, you know, 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, you know, like I’m not in these like intense poses yoga can get pretty intense just the relaxation type you know yin or restorative it really I mean even in florid 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 and my withdrawal really does give you some kind of like 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 these, they do work. Yeah.

Dr. Mark Leeds [09:56] Yeah, definitely. And it’s true though, there is this thing in the medical field of, at a certain age, they expect people to be on medications. It’s like a normal thing, you know, and these, even though I’m thinking of cholesterol medication, the statins, you know, that for a while they were pushing them and saying, we should all be on them. That should be like, you know, everyone should take an aspirin, you know, Lipitor or something similar. And, you know, just to protect us all from like, you know, this stroke that might happen or whatever. And I went from my first colonoscopy, like I think last year, and they were kind of surprised like, well, what medications do you take? I’m like, well, I don’t take anything. What do you mean you don’t take anything? You know, how are you like 53 and not taking any medications? I’m like, I mean, 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 a good, maybe a good thing to have to not be a good medication taker.

Nicole Lamberson [11:00] Yeah. Well, there’s some bad stuff out in the, you know, 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, you know, like I’ve seen behind the curtain, I’m very, you know, cautious about what I put into my body and the nurses when they’re checking you in are like, so what are your drugs, you know, and you have nothing. And they’re like, nothing? They’re like so shocked, you know, because it’s just not the norm. Yeah.

Dr. Mark Leeds [11:27] Yeah, definitely. So that being said, I mean, there are some supplements, you know, 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, you know, that anybody can, I think when someone’s in protracted withdrawal, anyone can react to anything. You know, there’s no two cases that are the same. And something that worked for three, four, 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. You know, 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, you know, and try something that may or may not work. Now, you had mentioned before we started Phenergan. Can you tell me more about how that might be helpful?

Nicole Lamberson [12:29] Yeah. So I just stumbled upon it, you know, 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, you know, and it just pushed me to the point where I was like, I literally want to die. Like, I can’t, I can’t take all of this at once, you know? So I got a prescription for Phenergan. 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 know, you can, you can sometimes take half of what the recommended doses and still have a really good response from it. So I took 12 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, you know, okay, well, I didn’t think much more about it though, because it really, in my mind, I was framing it around just this nausea event or whatever. And I still had the bottle of Phenergan 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 12 and a half, and it was the same. I calmed down. I felt less panic. I was able to sleep. And what one adverse effect I did notice because of my withdrawal, I’m very prone to like 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 like this Phenergan pretty much helped. And he wrote back and said, yeah, me and my psychiatrist partner that I work with, like it’s becoming our number one used drug for psychiatric type symptoms. We obviously they don’t use it long-term, just sort of a short-term rescue medication. Cause he 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 like a severe state, if you just need a break or something. Not to say it does have, you know, 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.

Dr. Mark Leeds [15:42] Yeah, I’m not sure about how serious the risk would be of that. But it is interesting. And did you get it as a liquid, like the cough syrup form of it or a tablet or capsule?

Nicole Lamberson [15:56] Tablet. Yeah, I had the tablet. Okay. Okay.

Dr. Mark Leeds [15:58] 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 [16:11] 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 and, but she’s also in withdrawal too. And she lives over in Europe and she said, oh, that’s whenever I was in crisis, that’s what they would send me home with was Phenergan. So I just had no idea it was used for psychiatric type stuff. So and it was just kind of coincidence that I took it for nausea. And I’m like, this kind of worked, you know, in the moment anyways.

Dr. Mark Leeds [16:47] So what like like what did it relieve as far as like the protracted withdrawal symptoms? Like what did it help with?

Nicole Lamberson [16:54] Yeah. So I didn’t feel like normal. Obviously, it didn’t like reverse the withdrawal or anything and make me feel like, oh, I’m healed. You know, it was more of just like a cover sort of. So sedation, sleep, some panic relief, anxiety relief, just like a calm, you know, feeling of like, I got a break from it for a little bit, if that makes sense.

Dr. Mark Leeds [17:18] Okay. Yeah, that sounds, I mean, it’s definitely good to know. I mean, the more tools we can put in this big empty toolbox that we have, the better.

Nicole Lamberson [17:28] Yeah. 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, you know, 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, like that’s kind of welcomed sometimes when you just need an emergency break from it or something. So,

Dr. Mark Leeds [17:55] Yeah. Yeah. And I think I might have mentioned to you, we’d 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. You know, 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. And you know when 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 was completely like 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 like 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, you know, 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 you know beyond like a few weeks that’s another dependence that they’ll develop so

Nicole Lamberson [19:23] That’s the problem isn’t it like I mean maybe some people are suffering so bad they don’t care but you know they’ll take something every day just because it’s that bad and I can’t you can’t fault them for that like everybody has a different level of what they can tolerate but for me that was the scary thing like 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 like 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, you know, 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, like 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, you know?

Dr. Mark Leeds [20:47] Yeah, that’s a good point. You know, like, it’s easy for a doctor to think, well, the, you know, opioid dependence and withdrawal is bad, but not nearly as bad as benzo withdrawal 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 it really, 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 [21:15] Yeah, I think just if people can get away with, you know, 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, you know, it’s ideal. But like you said, everybody’s different. And Phenergan 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, you know.

Dr. Mark Leeds [21:46] Yeah. Did you ever have issues with histamine sensitivity?

Nicole Lamberson [21:52] Not that I know of but I mean 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 like determine that or sort of narrow it down to

Dr. Mark Leeds [22:14] I’ve seen a couple of really severe cases of it. And sometimes it can manifest as intestinal discomfort, which, you know, could be, you know, 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 it is, you know, maybe it is an allergy to environmental things. And, you know, and I recommend, you know, like an air filter and cleaning the pillows and special pillowcases and all these things for environmental allergies, you know, keeping the pets out of the room, which isn’t always a good thing because, you know, animals, you know, a dog or a cat might be really comforting. And now you tell the person that don’t let the animal in your room anymore. And, you know, it turned out that, you know, 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, you know, and then the treatment seems to me, you know, 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, you know, they can avoid them as much as possible. And then there’s like, you know, the enzyme DAO that can help and probiotics and, you know, and that’s come up with patients. And recently, someone I spoke with, you know, they were questioning the probiotic. They’re like, well, aren’t there certain probiotics that people in protracted withdrawal shouldn’t take? And, you know, there can be sensitivity even to the DAO enzyme if you take too much of it or the wrong one. So it’s very it’s really tricky. But, yeah, the histamine thing is definitely real and it’s something to consider. Yeah

Nicole Lamberson [24:05] I mean for a long time I was so messed up that it was like I mean everything was wrong so it was like is this from this or my food or like 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 you know 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, you know, medications, but mold and, you know, 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, you know, smells and chemicals and soaps and foods and that kind of thing. He said it’s very common presentation.

Dr. Mark Leeds [25:25] Oh, that’s interesting. That might be something to look into further. You know, 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 [25:47] I will say the longer I’m away from the drugs, like as I’m further out into protracted, I see, 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. You know 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 so

Dr. Mark Leeds [26:24] Yeah did you ever have akathisia at any point

Nicole Lamberson [26:29] Oh yeah I had 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 Remeron, Seroquel 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 like 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 akathisia 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 couldn’t, 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 akathisia enough where I could live with the way that I felt and hang on so yeah

Dr. Mark Leeds [27:51] Well and how long did the akathisia last again

Nicole Lamberson [27:54] I mean this 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

Dr. Mark Leeds [28:04] Bed. You didn’t have it again after, after you reinstated and tapered, correct?

Nicole Lamberson [28:09] I did like at a low level, if that makes sense. Like I felt like it was always kind of just under the surface. So, 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 like, it was just there. And the only way it would come out is if I was like made to be super stressed or like, super panicked or something, then it would come back. And I would feel that same, like, you know, type of feeling, but if I was calm, not, it wasn’t a problem.

Dr. Mark Leeds [28:52] Do you think, and I know some people that go through this, you know, they become activists in the field of like really being angry about what happened to them, angry at the doctors and 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, you know, 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 very gradual taper if they’re really suffering

Nicole Lamberson [29:25] 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 well, 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 like, I think it was like one eighth or one quarter of what I came off of. And that doesn’t work. I mean, your brain remembers what you were taking, you know, 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 you know 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 you know like tough man stuff that goes on in the withdrawal support group sometimes like just stick it out, you know, 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. You know, 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 so but that seems to be like the rare type of you know 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, bad withdrawal state for a long period of time and damage the nervous system. Yeah. Yeah.

Dr. Mark Leeds [31:48] Yeah. One thing I’ve been thinking about is, you know, when 9-11 happened, they, you know, they’re 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 in the medical, 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 how to, you know, each medication should come with tapering instructions and a tapering mechanism. You know, here’s like a taper pack, or here’s a special, you know, we don’t give this to everybody, but here’s like a, you know, special graduated dosages or a liquid form. Same thing with addiction treatment with buprenorphine, you basically have four or two, really two dosages that are available for buprenorphine because you can’t get the 12 or the four milligram anywhere, but you have the eight and the two milligram buprenorphine. And most people are, 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. Yeah, you’re stuck. Yeah, it almost does seem like some kind of medical terrorism. Like, like, where’s the tapering? Where’s the teaching? You know, like, like, a lot of doctors, I don’t think know that tapering should be done with the, like, the SSRI is 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 do I do? It’s like, well, maybe take half the dose for a few days, and you’re probably done then. You know, they just don’t even know what to do with that. It’s not the instructions.

Nicole Lamberson [33:49] Yeah, it’s scary. And so people who are considering taking this medication need to know that ahead of time, like that’s part of the informed consent, like, hey, depending on what you’re on, you know, by the way, it doesn’t even come in the doses, you might need to get yourself off. So you’re gonna have to figure that out. If you’re on these, you know, beaded ones, you may have to sit there with a little, you know, thing and count out tiny little bee. This is going to be part of your life. If you want to get off of this stuff, like 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, you know, the FDA put out a black box for benzodiazepines a couple 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. Like we’re super grateful 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 deprescribing 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 far we’ve had one meeting and it’s going well. And I think they’re hearing us and really interested in having like 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, you know, what they are.

Dr. Mark Leeds [35:55] Yeah what do you think of the ashton method it you know it does seem it maybe it’s dated maybe there’s better ways to do it but I mean 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 [36:10] Yeah I mean I love Heather Ashton I think she was like the pioneer but anytime you know someone does it first I think many, 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 like, you know, 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, you know, I’ll do it. I’ll do it better. And we have ways that we’ve developed, you know, 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, you know, Klonopin 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 as they try to follow it like a cookbook, you know, like 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, you know? Yeah. Yeah.

Dr. Mark Leeds [37:42] So as far as, like, as far as other things that might be helpful, somebody mentioned in an email, they said they looked at my material and feel I’m not doing any biohacking. And I wasn’t sure what they meant. Like, like, what is, what is biohacking exactly? Like, I just imagine, you know, there’s, there’s these groups of people that are, like, trying to grow, like, you know, fresh vegetables and healthy meats, and they’re doing all these like crazy things to take, maybe they’re taking psychedelics, like, or they’re taking all kinds of supplements blended together, but I’m not, have you heard of that biohacking for benzo protracted withdrawal?

Nicole Lamberson [38:18] Okay. So in the, in the, like, I’m a, I’m a member in some of the primal paleo keto worlds. And I, you know, 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 what, how we managed to evolve. And in that world, the biohacking stuff is like using blue light blocking glasses, you know, to 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.

Dr. Mark Leeds [39:06] 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 you 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, and the diet, that’s another good point. I think some people have told me that a low carb diet helps them. And I think it helps me too. I feel less anxiety if I’m eating low carb.

Nicole Lamberson [39:41] 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, hmm, interesting. So I must be more less anxious if I’m not doing that, you know? Yeah. Yeah.

Dr. Mark Leeds [40:10] And I mean, I know, 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 a ketogenic diet to treat seizures in children where they were resistant to other treatments. And so I was thinking, know, I was thinking like seizures are like the worst thing of, you know, someone is in benzo, acute benzo withdrawal, they could have a seizure. So that’s like the opposite. That’s like the one thing, the thing you don’t want, like that over, you know, excitation. I can’t even think, I’m going to cut that part out. Yeah. Excitation, whatever. But yeah, like the brain is overstimulated. And, but yeah, so you don’t want a seizure, but the opposite of that would be, you know, you’re on a keto diet, you’re calm, you’re relaxed. So yeah I can imagine it would be good you know and sometimes I think I forget to bring that up with people and you know definitely something I guess we should probably you probably have a list you have a list of stuff that you go over when you when you talk to somebody like to make sure you don’t leave something out when you’re doing like a consultation with someone or helping them you know get through protracted withdrawal

Nicole Lamberson [41:15] No because I don’t I don’t really do consultations I mean, it’s more just like, you know, helping people out just from my experience or sharing my experience. But, you know, I always make sure to say, like, obviously what we already discussed is what worked for me, you know, might not work for you, but you can certainly try 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, you know, 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 like 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, you know, processed whatever now. And if you eat enough of that, you know, erythritol or whatever, it will, you’ll be on the toilet all day long. So, yeah. Yeah. I eat like real food, keto. So.

Dr. Mark Leeds [42:38] When you say clean keto, what about like things like those little like sausages and beef jerky? I guess they have some organic ones that don’t have stuff in them that are probably okay.

Nicole Lamberson [42:48] Yeah I don’t buy the ones that are you know preserved with nitrites or whatever and have I mean you can if you get like gas station jerky that can have like a lot of sugar in it if you don’t read the ingredients so I do get the ones that are you know 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 other brands like Primal something or Nick’s Sticks is another one so yeah I eat those yeah

Dr. Mark Leeds [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 so okay yeah yeah oh I wanted to ask you have you tried ketamine infusions

Nicole Lamberson [43:37] No I haven’t

Dr. Mark Leeds [43:38] Okay yeah that’s something I’m 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 like a series of them, like six of them. And then some people get upset, like, well, I didn’t get therapy. And not all the places give therapy because the medication is supposed to have beneficial brain healing effects, you know, with or without therapy. But yeah, I’m not really sure about that because I’ve heard people with other issues, other health, you know, people with mental health issues or chronic pain that said that it was like the greatest thing ever for them. But I don’t know if it really has any great benefit for protracted withdrawal.

Nicole Lamberson [44:17] Yeah, I haven’t tried it. I probably never would. I mean, I told you at the beginning before we started recording, I’m kind of, and a lot of benzo people or psych drug withdrawal people are like this, you know, they’re kind of scared of sort of rocking the boat too much or, you know, 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 just want, I want to feel normal. I don’t want to have, you know, trips or, you know, that kind of thing. I’m good after being in psych drug withdrawal, like 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 there. I watched a podcast the other day and I was like, Ooh, you know, 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.

Dr. Mark Leeds [45:27] Yeah. Yeah. Maybe it’s more of the derealization effect of like takes you further from reality.

Nicole Lamberson [45:34] Yeah. And I’ve been far enough that I don’t, I don’t want to go further. So, yeah.

Dr. Mark Leeds [45:40] Yeah. What do you, what do you think about, you know, they, I guess there’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, you know, 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, you know, I have talked to people that like, are really in denial, I think of like, that now their their life isn’t what it used to be, you know, maybe, you know, they’re not not the same, you know, like, just for example, like, I had a patient that went through COVID, and he had a really bad reaction. I mean, almost, 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, you know, 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. And I remember talking to him and he said, I’m having anxiety. 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, oh, so now you’re like me, you know, because that’s how I feel all the time. But, you know, I’m like, but that must be really hard for someone that has never felt that way to suddenly be confronted with that. But do you 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 [47:02] Yeah I mean I think you have to if you’re going to go through this process and you get like any level of disability from it like what choice do you have if you like 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, you know? So I feel like I did have to radically accept. I mean, 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, you know, like a temper tantrum and, you know, just normal human, like this isn’t how I planned for my life to be. And this is so unfair. And but that doesn’t change anything, you know. 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, like I was so I hated him for it. I was pissed. I was like, you know, like what a stupid thing to say. But it’s true. Like I could have been in some terrible car accident. Like 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, you know, it interrupts their life. And so it was just, this is just part of my journey, you know, and good things have come out of it too. Like, I also hated the people who tried to like, you know, sugar coat and make everything like, Oh, I’m grateful for Benzo withdrawal. Like, you’ll never hear me say that. Like, I am not grateful that 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, you know, I never thought I’d be working for a documentary film, like 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, your health is not optimal and you’ve lost a lot.

Dr. Mark Leeds [50:06] But yeah, yeah, yeah, definitely. And that’s always kind of a touchy thing, I think, pointing out to a patient, you know, things could be worse. And, you know, of course, they look at me as like, well, things are really bad. So, you know, easy for you to say that things could be worse. But there’s definitely some horrible things a person can go through. Like the I know the one that always comes back to me is that ALS, you know, Lou Gehrig’s disease, where a person is like and it’s terrible for anybody who listens to this, who has that. I mean, being trapped in your own body and not being able to get into a point where you’re in there and you can’t move or do anything. And, you know, maybe you’re on life support and your loved ones don’t know what to do. And, you know, and then you think about like how terrifying and claustrophobic that must be just to be there and not be able to move your limbs at all. And like, you know, then, you know, because I get claustrophobic just thinking of any enclosed space or not being able to move. But yeah I mean at least you know someone going through this you know they can you know they still you know they haven’t lost a limb and you know 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 and 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 [51:25] Yeah. And I would say if you’re supporting someone ever, not to tell them there’s people who are worse, like that’s kind of annoying to hear because what you’re going through is awful. You know what I mean? Like, and nobody wants to hear that. Like, well, you could have third degree burns all over your body and that would be terrible, you know, but it’s like, I can’t, I sort of came to that on my own as part of my acceptance journey, like examining like you know all these people around me not everybody’s having a great time not everybody’s healthy like people have horrible things that they have to contend with in life and so that was like sort of my own realization and also the most important one was like I wish when I was younger that I had had more guidance and you know just knowledge about like how you get one body and one chance at this, you know, like if we were younger and we were taught about like eating properly and like exercise and sleep and, you know, 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?

Dr. Mark Leeds [52:50] Yep. Oh, I totally agree. Yeah. Yeah. And that’s good advice for me to not bring up, you know, things could be worse for you know, cause I, you’re right. I think people figure that out, figure it out on their own.

Nicole Lamberson [53:01] Yeah. I mean, if there’s another way to say it, maybe, I don’t know,

Dr. Mark Leeds [53:05] But I can’t imagine someone going through that for years and years and having to live with that.

Nicole Lamberson [53:10] Yeah. And also not knowing when it’s going to end or if it ever will, you know, that’s the scariest part too, is just the timeline of what, I mean, 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 or, you know, but everybody’s just sort of hanging on with this blind faith. Like, well, it has improved from the first five years. So hopefully like the trajectory is in the right, we’re moving in the right direction, you know, and you just, you sort of have to hang on. There’s no doctor that can tell you absolutely this is going to go away. Like you’re lucky if you can find a doctor who believes that you’re having it, you know? So 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 10 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, you know, 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 401k and you didn’t get married or have kids or like, that’s way more devastating to your life in the long run than, you know what I mean?

Dr. Mark Leeds [54:51] Yeah, definitely. Almost sounds like being sent to prison for a long time, you know.

Nicole Lamberson [54:57] I’ve thought about it like that, but at least they can feel connected to, I mean, they’re not dissociated and they, you know, can play cards and, you know, a lot of people in severe benzo withdrawal just lay alone in bed, you know, they can’t stand to even be around other people, really. So, yeah, it’s like prison. Yeah. Yeah.

Dr. Mark Leeds [55:21] But yeah, I think, you know, it is important to have hope and, you know, and I like, I believe that, you know, the human nervous system, the brain can overcome anything. And it, and it could be actually damaged in some diffuse way of, you know, 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, you know, I’d like to believe there’s hope for everybody at some point.

Nicole Lamberson [55:50] Yeah, same. I mean, I try to say to myself all the time, like, if people were suffering so horribly, and they just never got back to life, like they would be all over the internet, like I would know them, you know, 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, like I, they’re not there. So it’s like, well, if they exist, where are they? You know, why aren’t they in the groups?

Dr. Mark Leeds [56:27] Like someone at 14 years, like, you know, maybe someone other than yourself, or they’re not probably not as bad as they were in the beginning. Like they’ve improved.

Nicole Lamberson [56:35] Yeah. They’ll all say they’re, you know, 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, you know, suffering to the point where they’re not back to life again. They aren’t working full-time. They aren’t, you know, 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, you know, handful full of years or whatever. So yeah, 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, have you seen more of it since we last talked or,

Dr. Mark Leeds [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 yeah and I didn’t respond really but I think I you know 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 I maybe on one hand I you know I’m sometimes afraid to say things publicly of like of that might imply there’s no hope you know like I like to think there’s hope for everybody but yeah not 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 I learn about it. And then as soon as I learn about it seems like everybody’s talking about it. You know, 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 mean, 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, yeah, it’s definitely something I’m aware of and I’m seeing more. And, you know, I think at that point I was more seeing people early on and really trying to give them hope like you’re going to, 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, help them push forward. And I think some people were really motivated to do things and move forward. But yeah, maybe like 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 timescale.

Nicole Lamberson [59:08] Yeah. Well, to your defense, a lot of, like you said, people in this position are angry and rightfully so, you know, but we sometimes take it out on people who are on our team, you know, 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, you know, it’s just, 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. We don’t like 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’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 like not a lot can be done. So that could be why you’re not seeing a lot of protracted people because what I mean, short of taking a medication or something like that, like, 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.

Dr. Mark Leeds [1:00:36] Yeah. Yeah. I’ve seen that people going through two extremes. You know, 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. You know, 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, you know, and it’s hard to say, was that stuff really helpful? You know, 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, you know, 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 [1:01:32] Yeah, yeah, I don’t know. I mean, it gets so expensive and then it’s just like, you know what I did that. I did that. I went to a functional medicine doctor and it’s like, you know, $200 for 45 minutes or something. And I came out with like a prescription of 10 diflucan for my, you know, gut overgrowth or whatever. And I was like, I mean, where does this, I didn’t know what to do with it. So 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. So, yeah. Yeah.

Dr. Mark Leeds [1:02:12] Yeah. But yeah, I would definitely say that, you know, the message should be, don’t, don’t give up hope, you know, and, you know, keep trying and don’t discount the natural non-medication things, you know, the 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, you know, those things that seem like, oh, yeah, yeah, they’re not going to work, but they do work and they do help.

Nicole Lamberson [1:02:38] Yeah. And friends and purpose. I mean, 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. You know, they’re in withdrawal distraction because I could get out of my head and I could make, you know, 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, you know, to use the jail analogy that we talked about before, serving your time in withdrawal, it’ll help.

Dr. Mark Leeds [1:03:24] Yeah. Yeah. And sometimes you reach a point where you’re like, maybe they put you in a minimum security prison and then, then you’re out on parole. So, you know, there’s progress.

Nicole Lamberson [1:03:35] And then you can start driving again or like, yeah, maybe go to lunch with a friend that feels safe or something like that. Yeah. You start getting work release. Yeah. Yeah.

Dr. Mark Leeds [1:03:46] Yeah. That’s a good analogy. So anyway, so yeah, Nicole Lamberson, thank you again. Thank you for joining me today.

Nicole Lamberson [1:03:53] Yeah, sure. Thanks for having me.