EPISODE 8: CHRIS PAIGE, LCSW, MSW
Hello and welcome to “Akathisia Stories,” a podcast co-production of MISSD and Chicago's Studio C.
MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.
In this episode of “Akathisia Stories,” we hear from Chris Paige.
A licensed psychotherapist, Chris had maintained a successful private therapy practice, working face-to-face with hundreds of clients over the years, and taught multiple semesters of psychopathology to master’s-level students, teaching students how to diagnose disorders. In all that time, he writes, no one ever mentioned to be on the lookout for akathisia, or even once uttered the word.
When Chris started to take the antibiotic Cipro, he experienced insomnia and agitation.
[Chris Paige] “So I call my primary and I said, look, if you could just give me 20 — or I actually asked for 10 1-milligram Klonopin tablets just so that I have some on hand if I needed to sleep. She gave me 20 because obviously she didn’t view it as a dangerous drug or anything that she needed to be cautious with. And then it was, you know, like I said, a few months into that, just taking it every three or four days, less than prescribed, when I started to get the really bad adverse effects.
Chronic akathisia is unbearable. And what I really needed was my family and friends to step up, and they didn’t. I think I’m here for a reason and that reason is to make a difference and prevent this from happening.”
We'll have Chris's full story in a moment.
MISSD is pleased to start off 2021 with some exciting new endeavors and several in-depth projects that will come to fruition during the first quarter of this new year. Soon, medical professionals will be able to earn Certified Medical Education units by taking a new MISSD akathisia course specifically designed for doctors, pharmacists, nurses, and other medical specialties. MISSD also was invited to contribute a chapter about akathisia to be included in an academic textbook about SSRI withdrawal and will be releasing a new public health video that highlights what family members observed prior to their loved ones' prescribed demise. The foundation is exploring project-based learning collaborations with several universities and continues to present at virtual conferences in lieu of in-person conferences due to COVID-19. If your organization would like MISSD to present, please reach out at MISSD.co.
Chris Paige has been a licensed psychotherapist for the past 28 years. Highly skilled in treating trauma, Chris has been featured on “Dateline NBC” for his work with children of divorce as well as in the national magazine Muses and Visionaries in which he had his own column called “On The Couch With Chris Paige.”
I'll note that his Zoom audio is not ideal. If you'd find it helpful to read the transcript while listening, it's available from studiocchicago.com/chrispaigetranscript. That's P-a-i-g-e.
Here’s Chris.
CP: Akathisia is something that, even though I had taught years of psychopathology to masters-level students and had practiced for decades, was something that I barely even knew about or had even heard about until I got injured by benzodiazepines and was the lucky recipient of severe akathisia for years.
AM: And what brought you to be on that medication?
CP: Well, I had had a pretty extensive history of trauma from childhood that I think just because the way the mental health system was in the '70s, '80s and '90s, nobody had ever mentioned trauma to me in any way.
AM: You mean, like, family-based trauma?
CP: Yes. Family-based trauma. I was adopted, which I think is inherently traumatic because I don’t think we were designed to be taken away from our mothers at birth. And then, you know, some parental divorce, some other exposure to some violence that just, I think, led to some underlying anxiety, and it was that anxiety that manifested itself when I got divorced in the year 2000. And when I got divorced it was very, very traumatic and very upsetting. And I was actually studying with a friend of mine that I was in grad school with, getting my Ph.D., and she noticed that I was really agitated and upset and said, “Hey, I’ve got this medicine Klonopin I take that relaxes me when I get super-stressed; why don’t you take half of one of these tablets?” And I did, and, as anybody that has taken a benzodiazepine knows, that within 10 to 20 minutes you get pretty profound relief if you’re having anxiety. And for me it felt like letting the air out of a balloon that had been full for many, many years. So, you know, I thought I’d found a miracle. I thought I’d found something that could remedy a lifelong of anxious suffering. Little did I know that this was a Trojan horse and it was going to sneak its way in and cause much more damage than the original problem of the anxiety that I was treating.
So I started taking a daily dose of Klonopin. You know, a doctor was on board. You know, I never thought twice about it.
AM: And my expectation hearing that is that it probably wasn’t too difficult to get that doctor to prescribe that.
CP: Not at all. They were more than happy to prescribe it. And I think that’s one of the ironies that I learned in this is that the pharmaceutical companies have done an amazing job of marketing, and some of that marketing is applied to doctors. And doctors truly believe that the more modern medicines are safer than the older medicines. So a medicine like Klonopin is viewed much more positively than, say, a medicine like valium. But the problem is is that, what I understand now, is that Klonopin is dramatically more potent and powerful of a medicine than valium is.
The doctors — the only place I really hold the doctors liable at this point is for not listening to their patients. I don’t think the knowledge base is out there. It’s emerging. But I just don’t think there’s mainstream knowledge out there quite yet about the catastrophic potential of taking psychiatric drugs. I mean, I truly believe they want to help us with whatever issue we’re sitting across them with. But unfortunately, they’ve been so programmed by a system that views these medicines like magic bullets.
AM: Yeah, I mean, you were talking about the sort of demarcation line between older drugs and newer drugs, and what comes to my mind is Prozac kind of being that. You know, pre-Prozac it was thought to be very risky to prescribe drugs of that kind. The risks were too heavy. And then I think it went just as far in the other direction, as you’re describing, to where people just think these are, as you just said, magic pills and the risk of harm is minimal. And as we’ve gone through the past 30 years, we’ve realized that the risks of harm from these modern medications are somewhat probable.
CP: Well, I think it’s one of the paradoxes of psychiatry, which is they look at depression and anxiety as these horrific, lifelong, chronic illnesses that are debilitating and impact every part of a person’s life that we can treat with these benign, safe medicines that actually have no impact. And it feels completely contradictory. We have this severe illness that we need to treat, but we can treat it with benign, safe medicines. Well, what I think’s really happening is we have trauma-based reactions that are being treated by very potent, powerful medications.
And back to that silver bullet idea, I think that’s another place where doctors have kind of fallen into a blind spot, which is the idea that when a medication is out of your body that that somehow means whatever changes have occurred in your body are suddenly remedied or back to original where they were before the medicine was introduced. And I always use the analogy of a bullet. You know, I can get shot and it can go through me and I can have no bullet in me, but I still have a bullet wound; I still have an injury; I still have something that needs to heal. And I think that that’s one of the places where medicine has kind of not been able to connect the dots yet, that if you’re treating what you claim to be severe illnesses with very potent, powerful medicines, then we have to accept the fact that these very powerful, potent medicines have side effects and adverse reactions.
I think that’s the dilemma too, though, is that medicine, in a way, bypasses or inhibits the body’s natural ability to do what it was designed to do. And I think psychiatry is kind of the chief offender of that, which is our emotions are hardwired into our DNA and have been passed down through thousands and millions of years of evolution to communicate with each other, to ask for help, to say we’re safe or unsafe, you know, to get resources we need, to communicate love and connection so we stay in social groups, to stay safe. And when you take psychiatric medicines — they’re very numbing and they’re very detaching from that very core essence of who you are, which is the very basic problem-solving process.
You know, I think of depression as keeping people safe. You know, if we think about when is an animal most at risk in the wild? A mammal is most at risk in the wild when it sleeps. So what’s the absolute first thing that gets disrupted in probably 80 percent of people that end up in a general practitioner or psychiatric office is sleep disturbance, insomnia, consequences of that. And then what’s the second most dangerous place or time for a mammal in the wild is when they stop to eat. And think about all the primary problems that get people into psychiatrists’ and medical doctors’ offices again that are related to overeating or undereating.
So it’s all primary mammalian processes we have that we have pathologized as illnesses because, again, if we look at depression — if I’m a social creature and the social environment is attacking me or making me feel unsafe, well, depression actually helps you because depression creates a primary behavioral manifestation of isolation. Well, guess what. If I’m isolated, nobody can hurt me emotionally at that moment. The problem is is that I’m cut off from the very things that can heal me at that moment, which is social connection. And then we put psychiatric medicines in that are numbing, and not only do they disconnect us from the very things that could help us, but I think they cause us to send inaccurate emotional responses to things because they’re altering our emotional responses, and then that creates tons of confusion between two animals that are trying to communicate with each other. And I think that mental health switched from “What’s wrong with you?” as the primary question, instead of “What happened to you?” And what happened to you is 99.9 percent why you’re sitting across from any medical practitioner, it’s because of experiences. And I think that the mental health system has forgotten we are mammals and that when mammals are scared or threatened, we all go through the same steps that our nervous system has built in to keep us safe.
AM: And I want to get into your background in psychiatry, but one thing I want to address quickly before we do that is you use a very specific adjective, “injured,” and I’d like you to kind of elaborate on that, why you use that word and what it means in terms of your own experience.
CP: Well, I think that when I started on this journey, when I first started taking these medications, and I think we’ve all been brought up to believe that medications are safe, and I think we’ve also been brought up to believe that somehow the body knows, oh, that’s medicine; this is good for me; I’m going to welcome and accept it into my body. I don’t think that’s what happens. I think basically any medicine creates basically a trick that creates what we decide are symptoms we want, which we would call relief. But the problem is is that, again, back to the marketing of what the drug industry has been able to do, is that any adverse effect or side effect is labeled an adverse effect or side effect. But there’s no such thing. There’s just effects. Medicines have effects. The marketing companies have decided, well, these are the effects we like and these are the effects we don’t like, so we’re going to call the effects we don’t like side effects, and then we’re going to call the effects we like the outcome or the mechanism of the medicine.
So what I’ve learned on this journey is that what happened to me is that when I took these medicines, they caused a neurochemical response in my brain that was an injury. My brain became injured. It altered how my brain worked. And I look at these medicines not as medicines but neurotoxins. They have toxic potential — for some of us. Not all of us. For some people, the actual toxicity and the effects are desirable for them. You know, if I’m going through a horrible time, being numb for a little bit of period of time can be very helpful. But if I can’t shut that numbness off or it becomes more permanent, then it becomes very problematic, or if I can’t get off the meds.
But I look at it like an injury, like basically that my brain — and my nervous system more specifically; not just my brain; my nervous system, which is my entire being was very damaged by not only taking the benzodiazepines, but I went to a detox because I was so sick on the medicine and desperate, they said they could get me off and they took me off a milligram and a quarter of Klonopin in five days, and what that basically did was electrically shock a certain set of neurotransmitters in my brain that are responsible for keeping me calm. And so when that part of my brain was hijacked and no longer functioning correctly, it was as if my brain had the accelerator pushed down to the floor but there were no brakes. So if you imagine what that feels like neurochemically in a person, it feels like you’re agitated and restless and plugged into the wall or into the sun or into a nuclear powerplant because there’s just unchecked, raging energy in your body. More specifically, with the akathisia for me was emanating from my spine, feeling like my spine was a tuning fork, vibrating all the time, and emanating intense agitation and restlessness that because it was coming from the core of who I was was agitating every cell in my body, which made it impossible to relax. I mean, my mantra with somebody who was fortunately keeping me alive during that process was “no calm.” “I feel like no calm.” There was no calm in my body.
AM: Well, two questions there: How quickly did you discern that injury upon taking the medication? And then the description you’re giving there of akathisia, is that something that you were going through in the course of taking the medication, or was that in the withdrawal?
CP: OK, so the second question: It was both. And what had happened, I think, is because I’d been on and off benzodiazepines previously, my brain had kind of been already injured what I’d say at a subclinical degree, meaning that there was an injury but the symptoms had not started to emerge, or at least dramatic symptoms had not started to emerge. So when I reintroduced the benzos again this last time, it was as if the pump had been primed. You know, I was ready to kind of go over that tipping point. And once I crossed over that tipping point, it’s like Humpty Dumpty: Once he falls off the wall, it takes an enormous amount of time to get him back up on the wall and get that nervous system back intact, functioning correctly.
AM: What period of time occurred there, you know, when you recognized the injury?
CP: That last exposure, it was fast. I mean, I’d only taken 16 total milligrams of Klonopin, averaging maybe a quarter milligram to a half milligram every three or four days. And even then, I didn’t understand half-lives and Klonopin has a long half-life of up to 50 hours. So that means it takes 250 hours to get out of your system. That’s more than 10 days, so if I’m taking it every three or four days, it’s actually never leaving my system completely. And I got dependent again on just that short-term use and then rapid — and I think that’s when the cumulative damage kind of came to the forefront. Rapidly, then, the symptoms increased. The akathisia came for the first time. I started pacing. I couldn’t sit still. I was agitated. I started developing severe suicidal ideation. Unfortunately, I learned a very sad thing is that if you’re injured on this journey, it can always get worse. If you do things that basically exacerbate the injury, the symptomatology can increase dramatically quickly, and that’s what happened to me.
AM: Before I ask my next question, I just want to get a timeline here because I think the story, as you were telling it, begins about 20 years ago.
CP: Correct.
So my first exposure to benzodiazepines was shorty after New Year’s Eve of 2000. And I took Klonopin for a couple years then and that’s when I started after a couple years noticing I was having some memory issues, and I stopped it and I suddenly got a lot worse and I actually found a neurologist in the year 2000 that said, “You need to go back on the benzos; that’s what’s causing these symptoms, and taper,” but he gave me no indication of how to taper. So I probably did a very rapid and haphazard taper off of 2 milligrams of Klonopin; it probably took me four months, maybe three months, and I was very symptomatic. But I got off. You know, I was able to work. I was able to socialize. And, you know, at that point I just believed that if I just took it regularly, that would be the issue. If I took it every once in a while, it wouldn’t be an issue. And I went years without really taking it. And then in 2013, a lot of life stress and I actually ended up taking Cipro, which is a fluoroquinolone antibiotic, and that caused some neuropsychiatric side effects, which were insomnia and agitation, which prior to that, I had no concept that antibiotics had any psychoactive properties. And now that I’ve done my own research, a lot of them have very psychoactive properties, and not only that but often have very powerful interactions with other medications also.
So I took the fluoroquinolone and that agitation started, insomnia started, so I call my primary and I said, look, if you could just give me 20 — or I actually asked for 10 1-milligram Klonopin tablets just so that I have some on hand if I needed to sleep. She gave me 20 because obviously she didn’t view it as a dangerous drug or anything that she needed to be cautious with. And then it was, you know, like I said, a few months into that just taking it every three or four days, less than prescribed, when I started to get the really bad adverse effects.
AM: And the Cipro would have been a short-term thing.
CP: Correct. Ten days I think it was. Yeah.
AM: But initially, that combination was very bad for you.
CP: Very bad. And I think the other thing too is that the fluoroquinolones and benzodiazepines, they compete at the same receptor in the brain. So what that means is you’ve got two drugs fighting to occupy the same place, and the fluoroquinolones sometimes will make the benzos go away, and so you’ve got people used to benzos and they go away; immediately they’re thrown into withdrawal. And unfortunately, a lot of doctors don’t know this interaction, so when the withdrawal starts and the patient starts exhibiting symptoms that look similar to the symptoms they were originally treated for, then they are labeled as an emergence or re-emergence or a worsening, again, of their mental illness, which can lead then to a cascade of more medication.
AM: You made mention of a friend who helped you through what you were going through. Can you tell me about that?
CP: OK. So first off, I had two people, and I met them both online — (laughs) — and they not only were the greatest people for the time they helped me, but one of them is one of my closest friends now.
AM: You met them online in the context of struggling?
CP: Correct.
AM: You were seeking help.
CP: Seeking help, seeking support. There’s nothing out there. You know, this has really been an organic thing that’s grown out of need, that there are groups like Benzo Buddies and Surviving Antidepressants and the Benzodiazepine Information Coalition, and things like that, that have emerged from this and are really the leading groups, you know, advocating for more informed consent and better education of doctors and generally more acceptance that this problem exists and is something we need to be really looking at, you know, systemically.
AM: And in seeking that help at that time, obviously you were online and you were doing research about it. Was that kind of your first indication that oh, this is something where I’m not alone and there’s well-developed research and anecdotal information that, you know, “I’m on something that is dangerous”?
CP: Right. I think I knew that because of my own — I mean, I think the blessing I had is that I am so educated about this stuff and I had at least heard the word akathisia before. I just didn’t really understand what it meant and understand conceptually, theoretically how it would manifest itself. And that’s something that I think is incredibly important for people’s survival in this is whether or not they have the insight to know what’s going on, because I think once people know what’s going on, they can at least reduce some of the potential for gaslighting, the potential for self-doubt, the potential for any of the things that can push people to suicide. And that’s one of the main things that I’m trying to do with my advocacy and work is find ways to — I think doctors do want to learn, and I want to find ways for them to learn. And I do believe that doctors want to help people and I want to find ways to give them the knowledge and the wisdom so they can find what they’re seeing. I think every person that ends up in an ER or an outpatient or inpatient psychiatric office or hospital, the first thing that needs to be assessed is their level of agitation and restlessness, and attributed to medication, not attributed to mental illness. You know, ironically, when I taught psychopathology to masters-level students, the very first rule-out for every single mental illness is, are these symptoms first able to be explained by a medication? And for some reason, that’s become the last rule-out, when it should be the first. The very first thing anybody should ask when somebody reports agitation or, you know, restlessness is, what medicines are you taking? Has anything changed? Have any doses been changed? Have any been added or removed? It should be the very first thing that’s assessed in every emergency room.
I would not be talking to anybody right now if I didn’t have those two people. I’d be dead, because everybody else in my life had abandoned me, and that’s one of the tragedies of this is that people end up in life-and-death situations completely dependent on people they met on the Internet. I would have killed myself, because every day I would talk to these two women for five, six, seven hours, screaming, “I’m going to kill myself,” and they’re like: “No, you’re not. No, you’re not.” And just that steady reassurance, and the connection to another human, it kept me alive. And that is the only treatment we have right now for any of these injuries is social support and love and safety and basic needs being met. And that’s — if anybody listening takes anything from this today, love the person you know that’s going through this, support the person that’s going through this, believe them because they’re telling you the truth about what they’re experiencing.
Chronic akathisia is unbearable. And what I really needed was my family and friends to step up, and they didn’t. They rejected me, and not only rejected me, but I like to call it actively plotted my murder, in the sense that anyone that they spoke to that offered to help me was dramatically and very aggressively discouraged from doing that. And so that’s why I say they actively plotted my murder. And I’m about to move home in a couple months, where I lived before this happened, and I want to raise money and awareness for what happened, and I’m going to create a fundraiser for me, and what I’m going to call it is The Chris Paige Memorial, But I Lived. Because I lived, and most people who went through what I went through don’t. And I think I’m here for a reason and that reason is to make a difference and prevent this from happening.
We have too many people focused on trying to scare people or, you know, use that as a way or be very angry at doctors, very angry at the medical system. I understand the anger. The anger is, you know, valid and reasonable. But it’s not how we’re going to make change. The only way we’re going to make change is to find common ground with the very industry and professions that we want to understand what we experienced. And I truly believe they want this knowledge. Every article I read on akathisia talks about they want the knowledge; nobody has ever had the knowledge to conceptualize that this is a movement disorder with severe movement issues, but it’s also a subjective, horrific, torturous, suicide-inducing problem that when you combine the two leads to incredibly catastrophic effects.
AM: I’d like you to elaborate, if you could, if you will, on the “active plotting of your murder,” in your words, because what I’d like to know is, you know, what was the basis of those reactions and what was the manifestation? I mean, what were the actions that people were taking at that time, and what was it based on?
CP: Well, I think for me and for a lot of people that go through this, I had anxiety issues so I used to drink, you know, so what happens is is anybody that had any preexisting alcohol or, you know, if they smoked pot or anything like that, immediately that’s where the labeling becomes and then they go into a very 12-step modality of “don’t enable this person.”
AM: So they’ve made up their mind what ails you.
CP: Yeah, they put me into a certain basket, you know, and I’m going to stay in that basket until I get better. And what the problem is is it creates the ultimate, horrible double-bind, and what a double-bind is is when we have two choices and neither of them are good, is that we desperately want to prove we want to get better, because we want to get better, but there’s no treatment. And then, you know, family and friends will suggest doctors and things like that, and you say, from a self-preservation perspective, “I don’t want to do that; I’m not going to take that med,” and then they say: “See, you don’t want to get better; you’re refusing treatment. Why would I help somebody that’s refusing to get better?” And then you create this cycle where the person just spirals, losing more social support, unable to change because they’re neurologically injured.
You know, imagine somebody with a compound fracture; the bone is sticking out of their leg, and their social support system is yelling at them, “Get up! Get up!” And when you can’t get up, they’re going, “See, you don’t want to get better!” And then somebody offers me a crutch, because my leg’s broken, and they kick the crutch away; they don’t want me to even have the crutch to get up, and they will kick you while you’re down. And I think that — if we really want to make a change in this movement, we have to show families how to help people. We have to also show families that it’s OK to be scared and angry. But it’s not OK to reject and abandon.
Families and social support hold the cure for this, the outcome cure. We can’t cure the symptoms; there’s no cure for that yet. But we can keep people alive, because the number one thing that I have seen in six and a half years of going through this is the people that don’t make it, that have chronic long-term akathisia, the number one reason isn’t the akathisia. It’s the lack of social support or the abject, like I said, plotting of murder of their social support system.
AM: Yeah. And you’ve identified the sort of two strands — people who, it just comes out of nowhere and it affects them in a very short period of time and they often do take their lives, and the longer-term chronic issue. And I know that in the former, the family members, friends, you know, they’re just at a loss.
CP: Right.
AM: “What’s happened to my loved one?”
CP: Right!
AM: And it’s not necessarily that they don’t want to help; they can’t help because they don’t know what’s going on.
CP: Well, I think the other thing that happens is you just nailed it, which is they’re scared. They want us to be OK. They love us. But they also become very normal humans, which is when humans feel helpless and it makes them anxious and upset, they need to get rid of the anxious and upset so they go, “It’s not about me being unable to help you anymore; it’s about you not willing to get better.” And so initially I think they feel that feeling of “Oh, god, I wish I could help,” but when they recognize or get at least in touch with their own helplessness and powerlessness, that can be very hard for people. And it manifests, then, as almost aggressiveness toward the other person. And I think there’s very, very primal mammalian things that are going on here too, which is — our energy changes so dramatically, it’s almost like if you take two magnets that are attracted and then you flip one, all of the sudden, you know, they can’t go together anymore. And I think when our energy shifts into that frantic, hysterical, crazed akathisia energy, we just naturally repel people around us, so it’s almost like nature is so evil at that moment because the very things we need we’re sending this energy out that’s repelling and pushing away that support that is intrinsic to our survival.
The other thing I think about is if you think about, like, we become a burden to the pack. And there’s Eskimo legend about elderly people being left on the ice flow because they were just a burden to the rest of the pack. And that’s what we feel like when we’re going through akathisia: We feel like we’ve been left on the ice pack by ourselves to freeze to death, and we just need somebody to come and thaw us out.
AM: What happened next in your story?
CP: I come out of the detox and they put me in an outpatient program and I’m completely out of my mind. And I end up in the psych ward. And it’s kind of one of the other things I’m going to write is the idea of two keys: I used to be the one that had the key of the psych ward; I used to be the one that opened the elevator and opened the doors and I had the access, and all of a sudden I was the one in the garment being led around with somebody else with a key. If you want to talk about a little humble pie but also an incredible, powerful learning experience in terms of empathy. Anybody that ever ends up in a psych ward — probably the antithesis of a place that helps people feel better emotionally.
So I end up in the psych ward, get out in a couple days, somehow fly home and then it just started to increase. I go from pacing a few hours a day to more hours a day —
AM: And did you remain on medication throughout this?
CP: They put me on — that’s another real joy of detox is they took me off a minor tranquilizer, which is Klonopin, and they put me on a major tranquilizer, which is Seroquel, so I upgraded my tranquilizer, and then they added three other meds, two of which I got off, and the other two I’m on will probably take another seven to eight years of tapering, so this entire process is going to cost me about 15 years of my life, if I make it through it in one piece. Pretty optimistic I will.
And that’s another thing that detoxes love to do is they love to give you “support” meds. You know —
AM: I was going to say, it seems ironic that you’re going through a detox and you’re getting more medication.
CP: Or imagine if you were an alcoholic and you went to a detox and they said all right, and you came out taking cocaine, marijuana, crystal meth, and ecstasy. It would seem so absurd. (Laughs.) And that was one of the most poignant moments where I really — the first time I really thought about ending my life was the first night after the detox. I’m in an outpatient dorm room, basically, looking at my medicine counter with like six new bottles. And because I knew what I knew, I was like, oh, that’s a decade of tapering.
And so, that’s another thing: I’ve gotten a few gifts from this and one gift is the ability to live in 24-hour intervals, because if I say, “Oh, god, I’ve got eight more years of tapering,” I could get very upset. So I’m like, hey, today’s a good day. And that’s how I survived three years of pacing too was I had one simple deal: I won’t kill myself today. And as long as I stuck to that deal, I made it to the next day. It doesn’t mean I didn’t come incredibly close, probably a couple hundred times.
So I make it home. I shut my practice down. I sell a business I have. I lose everything — my home, everything. I end up in Alaska with some people that were supposed to help me that ended up borderline abusing me and then kicking me out with full-blown akathisia 6,000 miles from home with nowhere to go. Again, that’s why social support is so essential. I don’t recommend homelessness and akathisia.
And then I had to fly from Anchorage, Alaska to Chicago — or to Cleveland but through Chicago. There’s nothing more enjoyable than an eight-hour flight when you’re pacing the entire time in the back galley. (Laughs.) When the flight attendants — thank god I had cool flight attendants — say to me, “I don’t think your medicine’s working,” and I was continuously looking at the exit door to see if I could pop it and just kind of jump off the plane, but kind of had to follow the “Dexter” rule: No innocent people get hurt.
So I make it to Cleveland where I did have one friend who agreed to help me and then him and I drove to Florida because another person [agreed] to help me for a period of time. It was kind of the underground railroad. I had, you know, people that would take me in different areas of my journey. And then just in the last couple months I’m going to be able to move back to West Palm Beach, which is where I never wanted to leave. And I guarantee the first night I’m in my new place I’m going to cry because I never thought that I would be able to have this full circle occur.
AM: And you mentioned a three-year period there where you were, you know, actively suffering the effects of akathisia.
CP: Yes. I stopped, like, actively pacing every day probably spring of 2017.
AM: And so how would you describe the last three years?
CP: Steady improvement. You know, I took a nap yesterday. (Laughs.) That was not something that happened for a long, long time.
The way I say it is that my nervous system is 80 percent healed, but I’m a 100,000 percent me. I’m happier than I’ve ever been. I told my mom the other day I’m like a puppy. You know, I’m like wagging my tail because I feel so happy to be in my body again, because when you have akathisia — that’s another thing is that you’re not claustrophobic. You’re claustrophobic of being in your body. It’s more like cleithrophobia where we want to get away from ourselves — (laughs) — and you can’t. And that’s why it’s just so torturous. But now I can get away from that. That feeling’s gone. The agitation’s gone. I’m calm. I’m going to get off this interview and I’m going to go watch TV and listen to music. I feel connected to the universe again. Music I was completely disconnected from. Laughter I was completely disconnected from.
AM: So what would you have done several years ago after this interview? Paced?
CP: I wouldn’t have been able to do the interview —
AM: You couldn’t have sat there and —
CP: No. And that’s another thing that’s so upsetting to me is we have people even in our community putting out information that says that akathisia’s controllable. And when you put out information that says akathisia’s controllable, every single person that’s a support system to somebody suffering from akathisia will wield this now like a cudgel and beat the person over the head saying: “You should be able to control this. This website says you should be able to control this.” And then when you can’t, then you lose all social support. So that’s another thing that is so upsetting to me about our community is that we’re cannibals, that we actually kill each other because we’re more focused on our message being right than about having accurate messages getting out there to a community of people that are suffering.
It’s not controllable. You know, if it was controllable, no one would kill themselves. OK? If it was controllable, there would be no reason for you and I to be having this conversation. (Laughs.) And that’s what people need to understand because then it takes away the responsibility. It takes away the need to control another person by saying, “You are choosing to do this.” That is the absolute antithesis of the message that somebody with akathisia needs to hear. They need to hear “I know you can’t control this, and I love you and I support you and I’m going to keep you safe until you can control this.” That’s the message we need to be giving people.
AM: I’d like to talk about the intersection of this condition where the personal and professional met for you and when you started to work on this in your research and what you’ve done with that and what you hope to do.
CP: So it took me about four years after the detox to become barely functional where I could work a couple hours a week, and then as I healed, opportunities have presented themselves. And what I see my job now is to create the bridge between the anecdotal wisdom I have and a whole community of people have and the medical — I would call it ignorance or just they haven’t been able to see it yet. If I can bridge those, that’s the goal, because I think that — you can’t understand what this feels like unless you’ve experienced it. So for me, conveying my story to others that haven’t experienced it, I don’t think it has a huge impact. I think my story is very valid for people that have gone through it to validate their own experience. But I think what people need to understand are things they can relate to. And I see my job also as to be somebody putting information out there that can bridge these so that people have something they can reference to show a family member that engages the family member instead of repels the family member. And I think, you know, education and just showing that we are injured and scared and all we need is love and safety and support. And if you give us that, we will hang in there. And we all want the same thing, which is that we all survive these things.
That’s the other thing: If anybody listening is experiencing this, I’m so much better now in my life than I’ve ever been, so please use me as somebody that’s pulling you towards health. I got you. My nervous system’s healed. Use mine. OK? You’re going to get through this. We need social support systems that echo that same message, because if we could just even shift the social support, we would dramatically reduce the suicide rate.
AM: You made reference earlier to sort of an over-diagnosis of akathisia, but you’ve also pointed to under-diagnosis of akathisia as something to be concerned about.
CP: You know, there’s a couple things — kind of what I talked about before: There can be mild, prodromal manifestations of what I would call, like, pre-akathisia, and if doctors would learn to look for that, that agitation, that restlessness, like I said, that might not be at the threshold yet where the objective movement has started, but if we don’t nip it there, it’s going to lead to that. I think because doctors have been trained just to look for the motor restlessness, they don’t go further. So no motor restlessness, no akathisia. They need to be checking again for that agitation and restlessness. Something I mentioned earlier before too is that we need to communicate with patients in verbiage and terminology that they can say, “Oh, yeah, that’s it.” Does it feel like ants inside of you? Does it feel like you want to rip your spine out? Does it feel like you just have tons of energy? Giving them, you know, really tangible ways to express it so they can say yeah, that’s a good way to express it to me.
Akathisia’s just a word, like cat. OK? But if everybody started telling me that three-legged armadillos were cats, “cat” would become a meaningless word then. So when people say akathisia’s inner vibrations and fatigue and all these things that don’t connect to akathisia, we’re making akathisia into a meaningless word. We need it to be a word that when I say it to a medical professional, the person that can actually help me at that point, they say: “Yep, I know exactly what you’re saying. That’s a movement problem that’s caused by agitation and restlessness. So how bad is your agitation and restlessness?” That is how we have to do it. And again, I’m not denying that people that don’t have akathisia are suffering horribly. They are. They just don’t have akathisia.
Akathisia’s a simple equation: restlessness and agitation that create movement, because agitation without movement is agitation. If I’m in my car and I’m stuck in traffic and I’m really agitated because I can’t get to my job on time and I’m punching the window and I’m screaming, I could look very agitated, but that’s not akathisia. I would have to get out of my car and start moving around or I wouldn’t be able to sit in my seat in the car. That’s akathisia. But if we learn to see the warning signs, the subclinical levels of agitation and irritability and fear and these subjective manifestations that are basically warning signs — if we learn to see these warning signs, we can avoid people getting akathisia.
I’ll see people saying, “I have really bad akathisia; it causes me fatigue and lying down.” That would be the equivalent of me saying when I have asthma attacks, I take deep breaths, because fatigue and lying down is the antithesis of akathisia. OK? Akathisia is the inability to lie down, the inability to be fatigued. When I was pacing 13 hours a day, my body was fatigued, but there was no fatigue. There was only chemical adrenaline and energy coursing through every cell in my body. And so we need this to be conceptualized accurately so we can talk to the very people that can solve the problem, which are doctors and researchers.
AM: Do you think that the active phase of akathisia, long-term as it was, is fully behind you at this point?
CP: I think it is always there as a gentle or not-so-gentle reminder if I’m a dumbass. And what I mean by that is if I drank alcohol, guarantee I’d have a visit from my old friend akathisia. If I ate really crappy food, I could probably get there. And I’m tapering medicine right now. If I sped my taper up, that’s a guarantee. I would be back to — like my helium voice, you know, “Oh my god, I can’t take, oh my god” — like high-pitched, frantic. Now I’ve got my very nice deep, calm voice again because I’m back in my body, a place I did not want to habitate for many years. And, you know, it’s just that again. I’m calm. But it’s there. You know, it’s there. If I did something dumb, I know it could come back.
If you'd like to find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start.
[Wendy Dolin] "If you go to our website, the section that says What Is Akathisia? you will see the two MISSD videos, as well as we have an educational PDF that you can print off. We also are on Facebook and Twitter. If you like this podcast, learn more about akathisia and just send it to your contacts. And this is the way we spread our message, and I hope that people will really look at the signs and symptoms of akathisia. They’re listed in the videos, listed on the website."
That’s MISSD founder Wendy Dolin.
You've been listening to the “Akathisia Stories” podcast. If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com, and please share this podcast and subscribe.
MISSD would like to wish everyone a healthy, happy new year. Through increased akathisia awareness, we are closing in on one of our goals: to make akathisia a household word. Together, we are making a positive difference and we appreciate your ongoing support.
I'm Andy Miles and I'd like to thank Chris Paige for his time and candor, and I'd like to thank you for listening.
PODCAST EXTRA
CP: Another important thing to consider with akathisia is it’s a mimic symptom. OK? It’s a chameleon. Akathisia presents in emergency rooms and inpatient units as a variety of other conditions, and that’s why doctors don’t see it because it’s a chameleon hiding. It changes its colors to whatever your pre-existing problem was. So if you have pre-existing anxiety, you get severe anxiety. If you have pre-existing depression, you become severely depressed in a negative, you know, just pessimistic way, and so what happens then is the mimicking symptom happens and then the people around us say, “Well, you had anxiety before; it’s just worse now.” “Oh, you were always scared of things like that; now you’re just even worse.” And it’s that mimicking, then, that causes incredible amounts of medical gaslighting, because if they’re not looking at this as a rule-out, first being a medication-induced problem, then they default back to mental illness and it becomes a self-perpetuating cycle again of medicines causing symptoms that mimic original illness leading to more medicines causing more symptoms leading to original symptoms leading to more medicine, and then, you know, it just spirals in a cascade.
And even the original neurologist that identified akathisia back in 1903 struggled with that: How much of it is subjective and how much is objective? How much of it is hysteria-based and how much of it is a movement disorder? OK? And what I think is it’s both; it’s the hysterics are part and parcel of the movement. As the hysterics increase, the movement increases. So all the objective is is basically an expression externally of what’s occurring internally. And we need to train doctors to see that as basically a window into the person’s subjective experience.
AM: But if we today identify this as something that’s medication-induced, what was causing it in 1903?
CP: Perfect question. The original causes were encephalitis, were viral. OK? And what encephalitis is is basically brain inflammation. And when I talk about complex neurotoxic akathisia, what I’m really talking about is toxic or neurotoxic encephalopathy or encephalitis. OK? So these medicines cause an inflammatory encephalitis response in the brain, which then manifests as akathisia. And so I think what really is the problem is the inflammation. It’s the brain inflammation and the nervous system inflammation that then causes these cascade of neurological symptoms. And so that’s why, when I look at it from a treatment perspective, I look at neurotoxicity as the model, and neurotoxicity fits with the two types of akathisia. With acute neurotoxicity, the treatment is immediate cessation of the neurotoxin.
When you get into the chronic problem, the problem with the chronic problem is then you have a chronic exposure injury, which is very different than an acute exposure injury. And once that chronic injury happens, the treatment is actually the exact opposite, which is everybody stand back and don’t touch him. We need to do a forensic autopsy of what’s happened medically to this person. But we’re not touching anything until we can try to pinpoint where that tipping point happened where there were subclinical symptoms that then crossed over to clinical-level symptoms. And by pinpointing that, then we can implement a very slow, measured taper off an offending substance, because that offending substance, once we cross from acute onset to the prodromal-chronic, the brain has down-regulated its neurotransmitters as an adaptation to this chemical that you just can’t pull the chemical away and the change happens, the up-regulation happens. It’s like I can’t pull a stool out from somebody unless I have another stool right there ready, or they’ll fall on their ass. And so when we have somebody with a chronic-prodromal phased type of akathisia, we need to do nothing and let their system recalibrate to whatever chemistry it’s being dealt at that time so it can figure it out.
Is a multiple-choice test easier with two choices or a thousand choices? It’s much easier with two choices. So the less information I can give my brain to have to synthesize, be it medications or supplements or foods or anything I introduce into my system, the less things, the better for my nervous system to figure it out.
So again, acute: rapid cessation of the offending toxin; chronic: step back, leave everything alone. Let’s figure out what’s happening so, like a house of cards or a Jenga game, I can take pieces out without the house collapsing.
AM: Yeah, and that’s also where we’re getting into seven-, eight-year tapering, as you described earlier.
CP: Right. You know, because the other thing I’ve learned is I support people tapering is when you think you’re going slow, go slower. OK? I’ll have people say, “Well, I did a slow taper; it was a year and a half.” I’m like, that’s not a slow taper! I mean — (laughs) — it feels absurd that that wouldn’t even be a slow taper because it seems like an enormous amount of time, but in psych-drug tapering, a decade is a slow taper. A year is a rapid taper. It’s dog years! One year in normal life — (laughs) — is seven years in the tapering.
AM: And just from my experience, I think the medical profession thinks of about three weeks.
CP: Right. Or they do another one of my favorites which is the every-other-day dosing, you know. That’s a real treat for the nervous system. You know, that’s a real treat, you know. Oh, it’s back again! Is it gone? Is it back? Is it gone?
Like I said: multiple choice test. Give my brain the least amount of variables it needs to figure this out.
AM: And that, I think, gets us into the checklist scale that you mention in terms of this diagnosis. Do you want to talk about that?
CP: Sure. I mean, what I’m creating now is a rapid checklist that I want emergency room doctors and inpatient psychiatric units and outpatient psychiatric units to implement, which is basically going to be what we’ve been talking about: rating that agitation and restlessness, creating queues, two or three queues so they can read down that checklist and give those cues.
And the other thing that’s going to be in there too is kindling, and kindling is a concept that leads to chronic akathisia. And kindling originally is a concept that comes from epilepsy, and what kindling means in epilepsy is that once you’ve had one seizure, your seizure threshold is lowered, and it’s easier, then, for your nervous system to have more seizures. And as it relates to benzodiazepines, it originally came from alcohol, and alcohol and benzodiazepines are the exact same thing; one’s a liquid, one’s a pill. So basically the consideration has to be that multiple medications can lead to the same problem.
Kindling also comes from alcohol, meaning that every subsequent withdrawal from chronic, severe alcohol use causes more severe withdrawals. Again, that threshold getting lowered and lowered. Well, benzodiazepines can cause that same problem, but I think all psychiatric drugs do, so every exposure you have to a psychiatric drug causes changes and down-regulations and adaptations in our neurotransmitter system and that creates, then, I think a cascade of the main thing that I think neurochemically that’s happening for us is we have too much glutamate. Glutamate is our excitotoxin in our body. It’s the accelerator. And that’s what it felt like; it felt like my accelerator was pushed to the floor.
So again, I want doctors to consider — I think I said it before — a forensic medication autopsy. Go back and see a medication history — when were these medications added; when were doses changed? — as a way to then see what precipitated the cause of the akathisia. And I think that doctors need to understand that just as exposure to illegal drugs over the course of your life has health consequences, chronic exposure to psychiatric drugs creates cumulative problems too. So obviously a person drinking a six-pack once in their life is not going to have the same cirrhosis risk as a person drinking a 12-pack for 10 years. So a person taking a benzo once is going to have a much lower risk factor than a person that’s been exposed for 10 years. There are variations. It’s not concrete. There are exceptions to all these rules. But they are general rules that the more exposure, the degree of exposure, meaning higher dosing, and if we look at toxicity research from solvents and chemicals like that, it validates all this: higher level of exposure, longer level of exposure, higher level of injury.
And so all I want to do is create a checklist that can assess that injury in two minutes.
AM: But once created, how do you get that out to the medical community in a widespread way?
CP: I think my goal is, once the checklist is out, is to get a grant for suicide prevention and see if I can get it implemented in one or two emergency rooms to see if it has the effect that I think it will. I mean, if we could identify akathisia within two minutes in an inpatient emergency, acute setting, we would cut the suicide rate dramatically in this country. And so anyone out there that’s a researcher, call me. You have an opportunity to change the world, and I really think that with my three years of 14 hours a day pacing, I’ve got a lot more anecdotal experience than anyone else out there. (Laughs.)
If we can get this implemented in a very fast, screening way — and ironically, the screening is going to be to get people off meds and not hurt them more. It’s not going to be to add medicine or add any treatment. Remember I said there’s two treatments: acute treatment — stop the medicine; chronic treatment — everybody step back and don’t touch anything. That’s it. And all we have to do is figure out how to assess who falls into one group and who falls into the other group, because the two treatment strategies are completely different. And that’s where research has to come in too because is it four weeks? Is it eight weeks? Is it 12 weeks? You know, what is the exposure time that we can say, OK, stop it now? Or what’s the exposure time when we cross the threshold that we say can’t stop it now, that we have to go to the chronic view of it versus the acute view of it? And only through research are we going to be able to find this. And again, it’s going to be very idiosyncratic too because withdrawal experiences and injuries for all of us are very idiosyncratic, although there are a lot of common themes.