Ketamine

Transcript Transcribed by Laura M.

Courtney: Hello everyone and welcome back. My name is Courtney, I am here with my spouse, Royce, and together we are The Ace Couple. And today we’re gonna shake things up a little bit and talk about ketamine. Yay…

Royce: Oh, that’s the topic for today.

Courtney: Didn’t I tell you?

Royce: Probably. I’m tired.

Courtney: [laughs] Yeah, so ketamine obviously has not the best reputation in the world right now. I can think of three high profile reasons off the top of my head why ketamine is normally pop culturally mentioned either as a joke or a warning.

Royce: What are those three?

Courtney: Matthew Perry of Friends; his death and all of the ketamine discussion surrounding that set off a lot of alarm bells for a lot of people. Also more centered within the queer community; the death of The Vivienne, who is one of the most famous drag queens out of the UK, Ru Girl, was on All Stars over here in the US even, had spoken about substance abuse issues surrounding ketamine and did, unfortunately, also die as a result of recreational abuse. And just Elon Musk’s life, whole thing. Everything about Elon Musk.

Royce: Is he pro-ketamine or something and so everyone else has a negative take on it?

Courtney: Yeah, have you not heard? Almost any time I hear someone either joking about Elon Musk or...

Royce: I generally try to not Elon Musk.

Courtney: I mean, that’s so fair. That’s so fair. But I had to pay attention to him when he was actually messing around in our government. But yeah, he is pretty known to be taking recreational ketamine. And so what I hear is people very flippantly often joking about that, like, “This is what ketamine does to you.” And anytime he does something ridiculous and makes a bad choice and ruins people’s lives, I will very often hear people be like, “Yeah, well, he’s on ketamine.” So we have two deaths and a life that are all tragedies in their own right.

Royce: And you haven’t even mentioned how when most people hear the word ketamine they go, “Isn’t that a horse tranquilizer?”

Courtney: Oh my gosh!

Royce: I mean, it’s also a people tranquilizer.

Courtney: It does say you can tranquilize people.

Royce: Turns out–!

Courtney: They really just said that.

Royce: Turns out physiologically we are not that different from horses. Many of the drugs that we give animals are the same as people’s drugs in different dosages or pretty close.

Courtney: I mean, that’s true. Later on, I will be mentioning a story about Gabapentin, which is something doctors have both prescribed to me and are very anxious and neurologically challenged Chihuahua, Quigley, who passed away.

Royce: I started paying attention to that when we had to take dogs or cats to vets, because that was something that I was never a part of when I had animals as a child, because my mom did that. But you’d read the labels and go, “Oh, I know what this is.”

Courtney: And sometimes like, “Oh, I already have this in my medicine cabinet.”

Royce: Yes, I could have taken a tablet and cut it in half.

Courtney: So the funny thing is horse tranquilizer is something that I hear, but I heard it so much more often from all of my non-American friends.

Royce: Yes.

Courtney: Like my non-American friends, anytime I would mention ketamine, they’d be like, “The horse tranquilizer!?” So I guess with all of the societal stigma around it, there’s really no good way to say it, but I love ketamine. I have a doctor and prescriptions and I have found– And I will tell this story. We’re just gonna get it all out in the open: Courtney’s very pro-ketamine. And it has gotten to a point where just legislatively, health-wise, especially with how open I’ve been about disability and chronic pain issues, I just need more people to have a new point of view about the possibilities of this drug when administered safely under a doctor’s supervision. Important caveat.

Royce: Yeah. Anytime you’re talking about drug use, particularly recreational drug use, I feel like– I mean, even with the push in some areas of the states to decriminalize various drugs, like, yes, we should not be sending people to jail for long periods of time for possession. But–

Courtney: Obviously.

Royce: A lot of the harm that drugs do are contaminated sources, either intentionally or unintentionally, and incorrect dosages. And if– the only way to solve that is to have an actual regulated industry around it.

Courtney: Yeah, and regulations is gonna be a big part of my building rant that is going to come. But let’s get the good, positive anecdotes out of the way, and then we will discuss why our country is terrible. I feel like that’s been a recurring theme.

Courtney: So as many of you listeners know, I have Ehlers-Danlos Syndrome, as well as a myriad of comorbid maladies that often come with EDS. And something I have struggled with my entire life is chronic pain. I had pain since I could talk. But of course, when you are a child, especially when you are a girl, especially when doctors cannot see any physical injury on you, it was growing pains. If you want to hear more about life with EDS, we certainly have past episodes where I go more into depth with that. But since I was a very, very young child, my mother knew clearly, you know, a three-year-old shouldn’t be talking about her back hurting the same way, you know, elderly people do.

Courtney: And for a long, long time, it’s just, well, suck it up. Keep living. This is normal. Surely everybody’s body just hurts all the time, if mine does. But once you break through that facade and sort of realize this is not normal, and especially when factors like aging start increasing the underlying chronic pain that you have always lived with, you need to figure out something to do. And for me, for a time, unfortunately, just getting that initial diagnosis on paper and maybe seeing my first doctor or two that had some semblance of understanding about what I was living with wasn’t enough to actually get any sort of meaningful treatment. I was very often told, “Yeah, there’s no cure for EDS, so gotta kind of just try to manage the symptoms as well as you can.” Which can mean braces, mobility aids.

Courtney: But when you get to chronic pain management, that gets very ugly very quickly. ‘Cause there are at times the doctors you might see who don’t really think EDS can cause as much pain as it has the potential to do. Or you get put in the sort of chronic pain management pipeline, which at least in our country, in our area of the country, I’ve talked to lots and lots of people and it’s very similar stories. It’s almost like a checklist. If you have chronic pain that is not caused by some kind of injury that’s going to be cured with time, there’s like a checklist like, boom, boom, boom. Let’s try this. That didn’t work. Let’s try this. And you kind of have to go down the line. And you kind of have to do it every time you start over with a new doctor, even if you tell them, “I’ve tried this drug before and this didn’t do anything.” Sometimes I think it’s the doctor, sometimes I think it’s the insurance companies, because like it or not, the insurance companies really control way too much of our health care.

Courtney: But it gets very, very demoralizing very quickly. I know for me, I had doctors who would try to prescribe me gabapentin, and for a while, wouldn’t really see any benefit to my pain situation. They’d say, “Stay on it a little longer. We’re going to wean you up. We’re going to increase your dose. Stay on it for at least six months.” And I personally never had any relief from that drug. But that’s the one that comes up time and time again. Try gabapentin. And it’s like gabapentin and like prescription strength Ibuprofen. That was something I had multiple doctors try on me at different times. And when I said it didn’t help, it didn’t provide any relief, I’d either have some doctors who are just like, “Okay, well, you’re out of luck,” or I would have a doctor or two that would be like, “Okay, now we’re looking at opioids.”

Courtney: And there were a couple of occasions where I had a doctor write me a prescription for opioids. Which I never took. I did not take opioids just regularly as a base amount of chronic pain. Because I’m personally scared to death of it. I have seen the opioid addiction crisis in this country. I have witnessed people that I know and love struggle with these things. I was very young the first time a doctor wrote me a prescription for this, and I did not see it going anywhere positive. But once you get to that point where they’re writing you another prescription, “Okay, nothing else worked to this point, try this.” “Well, I’m uncomfortable trying this.” “Well, that’s my last idea. So you either take this or you live with what’s going on.” So naturally, I have always been curious in trying to look for any amount of chronic pain management help that could be out there, willing to try most things.

Courtney: Well, I say that, I’m actually pretty– I’m pretty leery of trying a lot of drugs. I really am. Or I was, at least, at a point. When I first set up an appointment to talk to a doctor and get a consultation about a ketamine infusion, I was terrified. I was like, I have never done anything that is even remotely like this. Remotely hallucinogenic. I was a big ol’ square. So I was like, I don’t know what to expect. But certainly as laws have gotten more lax– I mean, I was driving down the road, I don’t know, six years ago maybe, and all of a sudden there are just like signs on the road, as if they’re politicians, like little political signs. It would be like, “Oh, vote for this guy for mayor. Vote for this person for your local district.” And then there’d be a sign–

Royce: “Vote for ketamine.”

Courtney: Well, no, then there’d be a sign that would just say like, legal THC. And I’d be like, what? What? What is going on?

Royce: Are you going to vote for that or are you saying it’s already here?

Courtney: Well, then there’d be an address. It would be like ‘Legal THC’ with an address. And I’d be like, is this a trap?

Royce: Is this a business or just some guy’s house?

Courtney: It was a business because I took down the address. Like, what the heck is going on? Because all of the products that have just increased in availability over the years, even like CBD products, think of all of those, whether it’s something you take an edible or you bathe in it or lotions.

Royce: There have been some weird cases with, like, Delta 8, Delta 9 products where I feel like someone was exploiting a loophole.

Courtney: That’s exactly what this was. When I went to this address and I was like, explain the sign. What is this legal THC? I think it was like a Delta 8 when that was like first– When a company first realized, “I think I can sell this legally.” And then all of a sudden there’s just, like, street signs. As soon as I was like, well, I guess if it’s legal… And I would ask questions, I’d be like, will this help pain? Will this... You know what? Didn’t help me. And when things do not help me, I don’t keep trying. Not for very long. I was like, I do not like this. I do not like this at all. And when it comes to ketamine, at first, I heard of it as a prospective drug for treatment resistant depression. It was friends of mine talking about how, “Yeah, I’ve been monitoring this, this has been coming more and more available. I’d love to try this someday for X, Y, and Z.”

Royce: Yeah, it is in– I guess on one hand, is in the same class as psilocybin and LSD for the treatment of depression and things like it, I believe.

Courtney: And obviously, I mean, depression is such– such a beast, which I lived with for nearly my– Well, not even nearly, my entire childhood, teenage years, early adulthood, suffered from severe depression. And so I was like, “Man, that’d be really great.” But then I started doing some research and seeing some early studies about how this is actually really effective for chronic pain. And so I kept my eye on it for a little bit, long before there was any place by us that could do this. But when we finally got to a point where there is a clinic near us, I can set up a consultation, I can talk to the doctor, I can give this a try. I was very, very nervous. I was very skeptical. But I was also at my wit’s end.

Courtney: I not only had a base level of pain that was bordering on unmanageable on a good day, but I was getting more and more really frightening dislocations or subluxations, partial dislocations in, like, my neck. And I was needing to get scarier and scarier braces to keep my body together. Like a hard collar neck brace. And I am perpetually thankful that we could afford the first round of treatments because it is not cheap. And that is one of the rants we’re going to get to because I fully believe that for a number of people this is a life-saving treatment. And it needs to be more accessible to the people that it can help.

Royce: Well, one thing that you found– And I was curious while you were leading into this topic, I looked up a little bit of just searching ketamine and inflammation. And there is some information out there. But if I go to, for example, just the basic Wikipedia page for the drug and expand and search for the word inflammation, it doesn’t appear in the entire document. But you found that, due to– partially due to a coincidence with other medical things, you were having inflammation markers in your body measured at fairly regular intervals. And you knew that you felt much, much better after having a ketamine infusion. And it just so happened that you had an infusion and then very shortly thereafter had your inflammation levels measured and there was a drastic, like, shocking drop in your inflammation. And inflammation and chronic pain are so heavily intertwined, and it’s a big factor in a wide variety of types of chronic pain.

Courtney: Yeah, absolutely. And just for me, with my experience, it is nothing short of miraculous. At the clinic I went to, the recommendation was to have a series of infusions within a month’s time. So I was having probably two infusions a week for like three weeks or so. And that was a lot all at once. And I sort of asked like, well, what happens after this? To which the doctor I had, whom I trust very much, was like, “We will talk about it, we will see, we will schedule maintenance doses when you need to.” And so kind of, in one way that’s very funny, because it is too expensive and insurance doesn’t cover it, which are both problems in their own right. I also feel like a doctor at a clinic where you are paying completely out of pocket for, actually, like, sits and takes the time to see what helps you and what you need and actually like custom tailors treatment for you, in a way that I do not get at any other doctor’s office that is paid through insurance. Which sucks! There’s no better way to say it, it sucks. But when I had the very first infusion, I came in with a lot of pain. I came out feeling probably better than I had in many years. To the point – and this is going to sound funny because it’s going to sound very drugged out – but all I wanted after that first infusion was to go into the forest and find a walnut.

Royce: You have had some occasions coming out of an infusion where you have had a very particular thing in mind.

Courtney: Listen, the ketamine talks to me. It gives me assignments. And as just a big old life experiment, I was gonna say, I’m gonna listen to the ketamine when it talks to me. And the ketamine always knows what’s best for me. I have not been steered ill even once by listening to the ketamine. But that very first treatment: go into the forest and find a walnut, it will be worth it, I promise. And so I get home from this infusion and you need to drive because you cannot drive yourself home after a ketamine infusion.

Royce: To clarify, I needed to drive Courtney. Not you, the person taking ketamine needed to drive. That is specifically forbidden.

Courtney: Yeah, I’m talking to you. You needed to drive me, so we get home and I am like– I’m standing up, I’m walking around, I’m squatting, and I’m like, “My body feels great. I need to go for a walk.” And you were like, “Oh yeah, I mean, we could go down to that little park down the road that we used to play Pokemon Go at.” And I was like, “No, I need a bigger forest. I need to go find a walnut.” And you’re like, “I think we have walnuts in the pantry.” I was like, “No, this is not an eating walnut. This is a touching walnut. I need to draw a walnut. I need to bring a notebook with me into the forest and take a walk and find a walnut and touch it and feel it and draw it.”

Royce: So Courtney had a few hours at the local arboretum.

Courtney: It was magical. That was a long walk that I went on, a really long walk for hours.

Royce: I feel like you should have specified before this story that you do not experience the heightened psychedelic effects that most people that take ketamine do.

Courtney: Which is fascinating, because my doctor preparing me in my consultation asked me, have you ever done any hallucinogenic drugs before? And I was like, “No, I haven’t.” And he’s like, “Okay, we don’t know how you personally will respond, but here are possibilities.” And he was giving me the rundown of like, some people who are religious see their God, some people who aren’t religious see their deceased family members. And he’s talking about these visions that I might see or people I might talk to. I have personally never experienced anything like that while having an infusion. I’m sure some people are more susceptible to that than me, but I have not. So it is really funny when I talk about like my little– my little like assignments that I get from ketamine, because everyone’s like, “That sounds very druggy, very druggy of you to say that, Courtney.” But I really don’t, in the moment, feel the psychedelic effects. I just sort of get a very overwhelming desire to do something very specific sometimes.

Courtney: And that first one, go to the forest, find a walnut. And I did. But when I say I– I walked for probably three hours, and I did bring my cane with me, which is good because the ketamine doesn’t help like dizzy spells. This is a chronic pain situation. So I do have some other symptoms that don’t get touched by this, but the pain is like the debilitating one. It is the worst symptom that I have dealt with chronically my whole life. So that alone is so very worth it. I felt great by the time you came back to pick me up. Which I think I just told you, like, “Come pick me up at closing time.” So I stayed until they closed, and I still felt good coming home. And I was like, wow, if this is what I have to look forward to, this is a game changer. And it was, and it still is. I would get in that first run of infusions that I had, I think every single one, I came out of the infusion with an assignment. And it was just so, so funny. Because one assignment I was like, “I need to learn how to play the theremin, and we need to go get a theremin right now.” Where in Kansas City can we get a theremin? So you drove me to, like, it was a Guitar Center, wasn’t it?

Royce: Yeah, you did some searching first and found one.

Courtney: I was like, wow, it’s been several years since I’ve actually been inside a Guitar Center, but this one Guitar Center has a theremin. And I just came home and played around with the theremin and made music in a way that I hadn’t for a very long time. And in addition to the assignments that ketamine was giving me, my ketamine doctor was also giving me little nuggets of life advice. But only like one little nugget every time. And after one of these sessions, he was like, “You should take up Tai Chi.” I was like, “Tai Chi, huh?” He’s like, “Yes, you should take up Tai Chi.” That was the most specific one because everything else was so much more general, like general dietary advice, you know, low inflammation diet kind of a thing. And much more general. But this one day in particular, you should take up Tai Chi. I was like, well, everything the ketamine’s told me to do has been great for me in my life, so I suppose I should also listen to the doctor who’s giving it to me. And this episode is not about Tai Chi, so I’m not going to tell that whole story, but I will say that Tai Chi in and of itself has also been life-changing for me.

Courtney: But it’s so fascinating because regular exercise is something that doctors have always said, for a variety of things, but even EDS, and when I was quite young, maybe 12, a doctor said, like, “Yeah, if you don’t start working out like a bodybuilder, you’re gonna be in a wheelchair by the time you’re 30.” And it’s like, oh, I don’t have money to hire a trainer as a 12 year old. What am I supposed to do about that? And jury’s out on whether or not dancing at the level I was is a good or bad thing for me. Some doctors say it was probably good, some doctors say it was probably bad. I’m gonna try not to think about it too much. But physically, there is only so much you can do when you are in pain that gets bad enough to the point of being debilitating. So it’s sort of a vicious cycle. You need to feel well enough to exercise, and then the exercise helps keeping you feel better. So the only reason why I’ve been able to take up Tai Chi and practice as often as I now can is because of these ketamine infusions. Let’s see, what were some of those other assignments? Because those first six were fascinating. Because every single one was so specific. Oh, there was the desk.

Royce: Yeah, walnut, desk, theremin.

Courtney: I have been calling it my drug desk just because the ketamine told me to get it. We had a spare room that we were working on making just a nice little cozy room, and there’s a little nook in it, and I came out of this infusion like, “We need to put a writing desk in that nook. We need a writing desk right now.” And you were like, “Right now?” I was like, “Yes, the ketamine told me we need to go now!” “Okay, where do we go for that?” I said, “Well, I’ve never been to this store before, but there is a consignment second-hand furniture shop I’ve driven past it all the time, never stepped foot in. The ketamine wants me to go there to find a desk.” And when I tell you, we found the most beautiful antique desk that fit perfectly. We took the measurements. It looks like this nook was made to house this desk. It was absolutely perfect. I was like, score one again for ketamine. It’s never wrong.

Courtney: But after that first round of infusions, my doctor said, “Let’s see how it goes for a while. If the pain starts coming back, we can give you a maintenance dose.” And he said, probably, you know, four weeks. I was like, okay, let’s see it. And at first, I could tell when the fourth week hit. I would come out of my infusion feeling really, really good, and then over time, like each day, after that initial week, the pain would slowly start creeping in. But the level of chronic pain I was dealing with before this, some of it was still very manageable for a while, but after four weeks from my infusion, at first I was like, “Ow, I’m starting to feel it again. I am starting to feel it again.” And they were able to accommodate when I needed to come in when things did start getting bad again.

Courtney: And luckily, a combination of probably just doing Tai Chi, exercising more, I’ve been needing the infusions less and less. It is no longer where, like, four weeks on the dot I feel like I can’t get out of bed anymore. So it’s been really, really encouraging to see that I can get to five weeks, six weeks, I think I pushed it out to seven once, still feeling well enough that I can function. And this is a very recent anecdote, but I mentioned on a previous podcast that I was about to have a surgery. Well, about a week before that surgery, a little over a week, I injured my neck again. So I had some time where I was back in the neck brace, wasn’t able to do my regular Tai Chi practice, and then went into the surgery. And post-surgery for the pain, like for, I don’t know, five or six days after, they do give you prescription pain meds. And in this case, it was– it’s probably just like oxycodone, right?

Royce: It was oxy, yeah.

Courtney: Yeah. And so they gave me those pills. And I did have abdominal pain. I mean, they cut into me. That doesn’t feel great. They removed an organ of mine. I’m sure that is very natural to feel some pain. But because of what I have lived with historically, I have a pretty high pain tolerance. So I was sitting there the day after my surgery trying to assess, do I even need to take this pill? Do I even want to take this pill? And if it was the abdominal pain alone, I probably wouldn’t have. But post-surgery, I needed to wait several days before I could actually get in to a ketamine appointment, and my neck was still bad. So the biggest issue was that my abdominal pain wants me to, like, lay or sit in this specific way, but my neck is all jacked up and I’m in a neck brace and my neck wants to be sitting a different way. So it was hard to find ways to be comfortable with both of these things happening at once.

Courtney: And I thought back to the times where I have had doctors prescribe me oxy only for me to not take it because I was afraid because it was just chronic pain and not a temporary situation. So I just thought, you know what? What the heck, maybe I will take this. It’s prescribed for after surgery. I just hope it touches my neck pain. If this will help my neck pain for a few days until I can get into ketamine, that will be a win. And when I tell you that I took those pills after surgery and it did make my manageable abdominal pain better and didn’t even touch my neck pain, I was so mad. Oh, I was so mad. But a few days later, when I went in to get my ketamine infusion– For me, I have a two-hour long infusion. I understand people who get infusions for mental health care, usually shorter than that.

Courtney: But after that two hours, I could move my neck normally again. Like, I think there have been a couple of different times where I’ve come out of an infusion going, “Wow, I have my range of motion back. I can move my head.” Huge win. Because sometimes I’ll get those neck injuries, and even once the vertebrae get sort of back to where they’re supposed to be, there’s so much inflammation in my neck and so much pain that the muscles will just continue seizing up, and I just cannot turn my head in one direction. And then I can’t even drive. Because I can’t, you know, look over my shoulder for safety when changing lanes. And so not only has it helped me with these, with just the base level of chronic pain that I’m dealing with every day, but when I do injure myself, it helps.

Courtney: Last– Around last Christmas time, I actually did end up falling down the stairs at one point, and I did not have a ketamine infusion scheduled anytime soon, but I had just fallen down the stairs and many things were not in their proper place. I was in such pain and my doctor was like, “Yeah, come in, come in tomorrow. We’ll see you tomorrow. We’ll make the time.” And I went in and then I could walk normally again. So it has helped with injuries, baseline chronic pain, and it keeps me more physically able to exercise, to try doing weight training, to try doing Tai Chi. Which is always so important for anyone of any ability to try to exercise within your means, but with me and my situation and with other disabilities, sort of the hard part is learning when you deal with chronic pain, when you’re exercising, what is an okay level of pain, what is, “This is still helping my body and will just be a little more uncomfortable,” and what is, “This is my body telling me if I keep going I will injure myself.”

Courtney: What is, you know, the injurious pain versus the– Gosh, I don’t want to say no pain, no gain. What is, you know, useful pain in the context of exercise. And sometimes it takes many, many, many years to learn your body well enough to actually be able to tell the difference in instances of chronic pain. Because for me, the chronic pain is there whether I’m exercising or not. So even though exercise is not a fun thing for me personally, it’s like, well, I might as well do what I can if I’m gonna hurt whether or not I’m doing this. But not pushing myself so far that I’m gonna dislocate something or hurt myself further. And that’s a tough process to figure out and get right consistently. And it’s even harder when you don’t have proper pain management to be able to fall back on.

Royce: Well, and another thing about this idea of having something that can reset you back to a reasonable baseline so that you can start making life changes and establishing better habits. Exercise is important. Diet is also very important. And it is really hard to eat well consistently when you don’t have the mental or physical energy to actually do that.

Courtney: Absolutely. Even just, like, cooking is a physically demanding thing sometimes. Like, frequently, if we’re cooking together, I’ll sit at the table in our kitchen and you’ll, like, hand me, “Here, do this, mix this sauce while I’ll be over here standing at the pot.” Because sometimes prolonged standing is tough. Even chopping things, like if your wrists or elbows are prone to dislocating, like there– it– I will never ever pretend that it’s easy. And it makes me viciously angry that I have found a way through my own research, resources – I mean, money is unfortunately a very prohibitive component of this also – I have found a way to get some amount of health care that brings me some amount of relief and increases my quality of life. It’s still not super easy and comfortable to pay for all these infusions. It’s way too much money. I want it to be more affordable. I want more people to be able to access it. I want insurance to cover it.

Courtney: But there are a number of reasons why that is not likely to happen anytime soon, and that is another big component about why I wanted to talk about this publicly, because I only foresee the conversation of ketamine in terms of chronic pain care, mental health care, I think the conversation is going to get more prevalent over time. And I want people to have more positive reference frames. I don’t want people to hear ketamine and think horse tranquilizer. I don’t want people to hear ketamine and think Matthew Perry or Elon Musk. Like, these are the common knowledge ketamine points right now. Or even party drug. Because I have also personally spoken to people who have had ketamine treatments for mental health care, for PTSD, treatment resistant depression. And a lot of those folks have, like, a nasal inhalation method of taking it, and it’s called esketamine or Spravato.

Courtney: I haven’t taken that myself, so I can’t personally vouch for it, but I have spoken to veterans with crippling PTSD who have told me that ketamine has absolutely saved their life and that it is a miracle drug. And I can say, yeah, I’ve taken it for different reasons, different method of taking it, and I agree. It is a life-saving drug. And I did get to speak with one vet who was among the first wave of vets to be approved by the VA for this treatment, which I think is wonderful. And the VA should provide and pay for these treatments. But for as much as that is a step in the right direction, there are so many capitalistic hurdles that seem insurmountable right now for getting these treatments approved for the general public and for a wider variety of uses. In fact, right now, if one were to do their own research on ketamine infusions in terms of chronic pain, one of the more common syndromes that will come up is chronic regional pain syndrome, which can be absolutely debilitating and devastating.

Courtney: And there are so many cases of ketamine being the only relief for people with this diagnosis. And there is a case of a patient who, as a minor, Maya Kowalski, was diagnosed with CRPS – I also read that there was a pain anesthesiologist who also highly suspected that she had Ehlers-Danlos Syndrome – whose parents, at a loss for this extreme pain she was dealing with, brought her to another country to have ketamine treatment done. This was not the two-hour infusion I have. I’m not super clear on the science of the details, so I don’t want to necessarily talk about that. But I can talk as someone who was a minor also with extreme pain. And I know that were there an option available, were it within our means, my mother would have done anything to try to get me out of that extreme pain that I had.

Courtney: And in this case of Maya Kowalski, there were doctors in the US who saw what they were doing trying to treat this very difficult to treat, very debilitating syndrome, they saw it as some sort of medical abuse. They thought of this as an instance of, you know, Munchausen by proxy. And Maya’s mother actually got reported, arrested, there was an entire custody dispute while this poor girl was suffering. And to try to end the political target that this family had on their back, unfortunately, Maya’s mother took her own life. And if you want to see more about that, there is a documentary about it called Take Care of Maya. And it just makes me so angry that in these unwinnable situations, where the pain is so unbearable that you are looking for any medical breakthrough that might be available to help, as any good parent would try to take their child’s pain away from them.

Courtney: And yet in our country, especially, we have people who don’t believe in medicine, who don’t believe in modern science. We have Christian science followers who will deny medical care for their children because they don’t believe in it. And children can and have died as a result of a lack of medical intervention. And the way our politics and our court system works, a lot of people will say, “Oh, well, you know, they have religious freedom.” And it just pains me that children are getting hurt for lack of medical care, and this is at times protected or condoned under religious freedom, but when parents are trying to find new answers for these extremely rare pain conditions, and seeking medical care elsewhere because it’s not available here, that they’re the ones who get punished. It’s really, really devastating.

Courtney: But at least in the instance of the types of infusions I have been getting, they are completely legal. There are many, many studies that show that they can and do help. I am living proof that they can and do help, at least some, people. And yet the insurance companies will not pay for these treatments because they say, “Well, it’s not FDA approved.” It’s not FDA approved. And the thing with FDA approval that I don’t think a lot of people understand is that it is very much a game for the pharmaceutical company to play in terms of getting things, quote, ‘FDA approved’. Because ketamine is FDA approved for an anesthetic use. It has been around as an anesthetic for a very long time. But the problem is the process that is in place in order to get it FDA approved for other uses, we need a pharmaceutical company to shell out millions upon millions of dollars to do new clinical testing for a very specific purpose in order to apply for that FDA approval.

Courtney: But here’s the kicker: ketamine is a generic and widely available drug. It is an old enough drug that the patent is no longer. Ketamine is just available and up for grabs. You can’t patent ketamine. So the pharmaceutical companies have zero benefit to shelling out for these studies that the FDA needs to see in order to start this application process for ketamine to be approved for any other use. So that means we have more smaller scale studies showing time and time again: this can be helpful for chronic pain, this can be helpful for treatment resistant depression, PTSD. I have even seen OCD thrown out. Some study showing that it can help that. And as someone who has been diagnosed with OCD, I was never medicated for my OCD specifically, and I more or less found a way to self-manage the symptoms I experience from it. But some of the more disruptive symptoms of it I do notice tend to be quieter shortly after my ketamine infusions.

Courtney: That’s not the reason why I do it, so it’s not something I’m touting as strongly because the chronic pain alone is a miracle. I do not say that word lightly. So what we have is a drug that under doctor supervision is safe for a lot of people. It is not considered to be addictive in these clinical settings. It is something that exits your system rather quickly so there aren’t lingering side effects, at least not for me, if not for many others. And it has, for me, touched pain that other pain medications just never did and never could. And my concern is, with the current FDA process that’s in place, a pharmaceutical company is going to need to know that they will recoup their millions and millions and millions of dollars if they do this. And the only way they will is if they have a shiny new patent that says, “We’re the only ones who can make and sell this thing.”

Courtney: And I do believe there is one company that is in the process of trying to get FDA approval for like ketamine patches I think I read. Like a slow release skin patch kind of a situation. So that’s exactly the kind of thing they almost need, like a new gimmicky method of administering the drug. Like esketamine as a nasal spray was sort of a new breakthrough in that. But we have, you know, the name brand Spravato. So that is their thing. That’s what they pushed for. Now in the future, down the line, at some point there may be patches where they’re looking for approval. But they kind of have to compartmentalize these studies too and only sort of seek it out for one thing at a time. So even if they have these ketamine patches, oh, maybe they’re only looking at this for mental health, but they aren’t looking at it for chronic pain or vice versa.

Courtney: And so it’s very, very frustrating to have been able to witness just how essential this drug can be to my life, and others who have spoken to me about their positive experiences, and knowing it can benefit many more people who cannot financially access it right now. And the main thing holding it up from even getting FDA approved for these uses is pharmaceutical companies being greedy. That’s all it is. And because insurance companies are always wanting to pay for as little as possible, they use FDA approval as such a convenient way to not pay for things. Like, hello, insurance company, I found a treatment that actually works for me for once. Will you pay for it? Nope, it’s not FDA approved. But what if it really helps me? It’s not FDA approved. All right, can you... You’re not gonna get it FDA approved.

Courtney: And in fact, I don’t even think we have time for this today, but if you at all care about the future of ketamine accessibility, or if you at all just enjoy when Courtney goes on a little health care rant, you won’t believe what my insurance company said to me this month. I have been on the phone with our insurance company probably twice a week at least, every week this month. Because we’re paying an ungodly amount for my health care, because they aren’t paying anything. Anything at all. And so, yeah, I’ve been trying to talk to as many managers as I can. And especially if you’re a foreign listener, if you are not in America– Every time we talk about American health care, we get listeners writing in like, “Sometimes I forget how terrible American healthcare is, and then I hear you talk for a few minutes.” You won’t believe what the healthcare company told me this month.

Courtney: So I don’t have time to get into it, but I will next week, mind you. We’ll do ketamine part two because we are not done with this conversation. But before I get too riled up, I will let it go for now. I will save it for next week’s rage. Come enjoy the rant. It will be an illuminating time. But as always, for this week, I want to leave you all with our featured MarketplACE vendor: Pocket Sized Quasar. In Pocket Sized Quasar’s Redbubble shop, you can find some very cute queer and nerdy things. We’ve got some beautiful stickers and designs that say such things as ‘queer joy is powerful’, ‘queer love is powerful’, and ‘queer rage is powerful’. That’s– that’s the sticker I need. I think I got the ‘queer joy is powerful’, but now I’m thinking I made the wrong choice. I might need to get the ‘queer rage is powerful’ because I need to remind myself that if I just yell at the insurance company enough–!

Courtney: Or if you are a D&D nerd like us, we’ve got a lot of stickers like: ‘world’s okayest warlock’, or ‘world’s okayest rogue’. We got ones that say: DM, sorcerer, barbarian, whatever class you are rocking. Or if you’re really nerdy, I can recommend Pocket Sized Quasar’s commissions. This is absolutely beautiful work. I love this art style and you can order a custom piece. Maybe get your own D&D character or other various OCs drawn. Or if you’re really, really nerdy, they also have a webcomic adaptation of Moby Dick. So I highly recommend you check that out as well. Links to Pocket Sized Quasar’s Redbubble, commissions, webcomic, all of those things are going to be in the usual places, including the show notes on our website and the description box on YouTube. And we’ll be back next week to talk about more ketamine and why we hate health insurance in this country. Yeah, it’ll be a– good time?

Royce: It will be a time.

Courtney: It will be a time. Until then, goodbye.