Episode 5 - Katy and her husband share their experience with akathisia

Katy Duffy and her husband, Ben, from Oregon share their experience with akathisia—a medication-induced disorder that was missed, misdiagnosed, and mistreated. They speak openly in the hope that others can recognize the signs sooner and avoid the suffering Katy endured.

Akathisia affects the entire family, not just the person experiencing it. Katy and her husband describe that impact with honesty and clarity.

Katy also partnered with MISSD to bring an akathisia awareness billboard to her Oregon community. Speaking out and advocating has been part of her healing—and a way to help others.

Transcript

SPEAKER_00 0:05

Welcome to Achithesia Stories, a podcast from Mist, the medication-induced suicide prevention and education foundation in memory of Stuart Dolan. Myst is a nonprofit dedicated to raising awareness about acadesia, a medication-induced disorder that can cause suicide, self-harm, and violence. Our mission is simple increase education and save lives. Katie is an academia survivor and mental health advocate whose perspective is grounded in lived experience. What began as a life-altering medication injury has become a deep commitment to awareness and prevention. Through her collaboration with MIST and public education efforts, she is dedicated to bringing language, understanding, and recognition to an experience that is often misdiagnosed, misunderstood, or missed altogether. Rooted in remembrance of those lost to acadhesia and in compassion for those still suffering, Katie and her husband, Ben, strive to honor their stories and help create paths towards healing and hope. So hi Katie, hi Ben, how you guys doing? So, Katie, can you kind of take us back to the beginning? You know, what was life kind of like for you before Akathesia entered the picture?

SPEAKER_03 1:24

Very full. Um, I was working two jobs, one with the public library, one with the district attorney's office. Ben and I have three kids, and so all the life things. Um, we owned a house and we did constant activities and we ran after our children, and it was just very full, and that changed very quickly.

SPEAKER_00 1:46

Yeah, I know you're working in the public library and also as like a victim's advocate. Can you kind of talk about what that work means to you personally?

SPEAKER_03 1:55

It it was very fulfilling to me. My career has been in law enforcement and criminal justice, and so helping people and advocating in a multitude of different areas has always been extremely important to me. I think I was born for certain things like that. I grew up in a library, my mom was a librarian for 40 years, and then I love books and learning and knowledge. And so, yeah, my life was very full in certain ways, in many ways, but I had taken a medication for about eight months as prescribed off label for depression, and that was Abilify uh at its lowest dose, which two milligrams, which to me didn't seem like much at the time, and I know very different now what that can look like. I know now that I started having problems right away. I can look back and the mental aspect of my life changed from depression to dark, much darker. And I just thought maybe that was like a residual outcome of transitioning the medication. And then I started having physical problems, especially in relation to my liver. And I was going and having these labs, and my liver labs were really abnormal, and they continued to progress into the point where I was having physical pain in the liver area of my body, and I felt really off in my head. And I, to be honest, I hid a lot of that from my family. It was just business as usual, and I was going about that, but things were getting worse. At about eight months into that, the prescriber of that medication, I reached out to them and said, Hey, like I've had these liver labs and they're really abnormal. And she just said, Okay, just stop this, stop the medication. Um, that was her written advice. Just stop taking it and um we'll reevaluate later. And um, that began an absolute living hell for us. I had delayed anesthesia. I actually think I had been off the medication for about two weeks before I sat up in bed one morning and it felt like a bomb detonated in my body and in my brain. And um, I immediately was having convulsions and it looked like I had some form of advanced movement disorder literally overnight, like within moments. Um, an unbelievable amount of terror, like needing to immediately needing to die, just about every second.

SPEAKER_00 4:37

Ben, I'll get you in on the conversation, you know. When you first saw what was happening to Katie, what did you understand about it and what didn't you understand about it? You know, and how had that experience kind of affected your role as a spouse?

SPEAKER_01 4:51

I didn't know anything. All I knew was that Katie said that something was wrong. She didn't feel well, she was all right, and so all I could do was believe her. Um we had her were academia months where everything had begun.

SPEAKER_02 5:13

Um so I I felt like I was feeling around in the dark.

SPEAKER_01 5:20

I didn't know what was going on. Her outlook on everything was much drastically different. I was like, I I didn't know what was going on, I didn't know who my life was. All I could go off was that she said something was wrong from the very beginning.

SPEAKER_00 5:46

Yeah, and and one of my questions was, you know, at what point did you know something was seriously wrong? I mean, I guess when you said you woke up that morning and it felt like, you know, a bomb had just been dropped on you. What what kind of happened after that point? Like what actions did you take at that time?

SPEAKER_03 6:01

It was our son's birthday. He was like turning eight. And um, I went to the ER probably within a matter of a couple hours. I was experiencing such hyperkinetic movement, um, both inside and outside of my body. And it not only was my body doing all of these things, but the inside of my head, it also felt like something had detonated inside of it. Um, so we immediately I went to the ER, and of course, it was explained as anxiety, and that that began that began an almost two-year um descent in Western medicine of going to ERs and physicians and neurologists and every practitioner uh you know possible to try to find answers and quite frankly to stay alive. And it wasn't until I mean we we went to so many ERs in the more we went, the more scared we felt. And we finally then said, you know, eventually we learned the word acaesthia. It wasn't until about two months in, um, we ended up in an ER in another city from where we lived. And the the ER physician um that was on call that day spent some time with me and looked at me and he said, I think you have acesthesia. And we had never heard that word, like many people, probably most. And if it weren't for him saying that word and using that word, and very frightened to think what the outcome would have been.

SPEAKER_00 7:49

So prior to learning about the word acadhesia, what would you say were some of the other biggest challenges you face and like getting a really accurate understanding of what was happening to you? You know, maybe something you might have heard at another doctor's visit or or or something else.

SPEAKER_03 8:04

I had so many symptoms. I was vomiting. I had completely lost my ability to sleep, which is a whole nother form of torture in itself. I could not sleep at all. I had this terror. Abs I mean, I even would look at my children and just feel terrified. It was like every horrific thing on planet Earth was living inside of me or coming after me. Every scary thing I had ever watched or heard or seen was it was some sort of ex like being in an existential hell where I had never it's such a hard thing to put into words, and people try, but it it was like being tortured. It was being stung by bees and just terror, absolute terror of even being alive, terror of looking at my family, every single thing, and I couldn't be still, I couldn't sit to eat. I had lost my ability to eat. I think the first year and a half, I lived on like seven foods because I had such severe acute reactions to even putting anything in my body. And so it was as though every platform and every foundation I had ever lived on, learned on known, it all got completely bulldozed to the ground. And I, like I said, so many symptoms, but the mental aspect of it as well was a whole nother. Not only are you riding alongside the physical symptoms, but the mental symptoms. And I, like I said, I it felt like my brain was shaking at such a high speed, I would be screaming, like screaming to Ben, screaming to my children. And it wasn't until about two years in I went to a functional neurologist. And that was the first time that anyone validated what had happened to me. And he said, Your experience is real, this has happened to you. Um, and he clocked the movement in my body at 11 hertz, which is like the equivalent of hummingbird wings. So essentially, from the chest, my body was filled with hummingbirds at all times, like a billion extra micro movements a day inside of my body, and um on top of on top of not being able to sleep and on top of all the other symptoms.

SPEAKER_00 10:35

Wow. So um kind of talk about the recovery process, like how how was your day-to-day after that? When you learned about acadesia, you know, and I'm sure you looked up other information, you read about it, you know, what did that process start to look like? And and how was Ben and the rest of your family involved and kind of helping support you during that time?

SPEAKER_03 10:54

After I saw that ER doctor and learned that word, I actually, when I went to that hospital, I voluntarily asked them to keep me there in lockdown. And I told them, I am not going to survive if you do not put me somewhere safe. And he was willing to do that. And it's because of that word, I had access to my phone while I was there and I was there voluntarily. And so I immediately, yes, like started researching. I got in the groups online, which was both life-saving but also as terrifying as could be, you know, the reality of this. And so I started learning and doing all these things, and I learned very quickly. They the the doctors, it was like 16 different medications they had tried to put me on. 60 to have pictures of them lined up, and every single dose I would take, it was so scary, and it was so scary for Ben and my kids. I was so it was scary. I came out of the hospital after two weeks, and I told Ben, I can't take any of this or I'm gonna die. I absolutely cannot take these medications. And I came home, and to answer your question, what I did was stayed alive. That's what we did. Ben drove me the only relief I could get was riding in a car. And the first year, Ben and my mom drove me up to 12 to 18 hours a day in a car to keep me alive. The first three years of this, I'm at four years, three months now, but the first three years, Ben drove me a hundred thousand miles in our car to keep me alive. That was it. Our kids had to adjust to a whole different life. I couldn't take care of them, I couldn't pick them up from school. Um, I had lost all ability to play any of the roles I had ever played in my life to anyone. There was no performing, there was no more ability to be anything I had ever been. Um, and I lived in a car. We lived in a car, and we were fortunate to have grandparents where we live that took care of our children, um, and a lot of friends and a lot of family that um helped along the way, but even along the way, a lot of that left. You know, people go on with their lives and different things, and um the things Ben has had to do leaving work to drive me, and it's really remarkable what we've done as a family, but there's a lot of loss and a lot of trauma that lives there still.

SPEAKER_00 13:33

And Ben, can you kind of talk about like what was the first time you noticed things were changing for the better? Like there was some kind of shift or there was some kind of recovery that was happening, and it was like, okay, we're it's not perfect, but like we're slowly starting to get out of this this nightmare, you know, and and and how did you do you notice anything change at that time about Katie?

SPEAKER_01 13:52

Um it's real gradual, but like Katie said, initially she was only eating three different things. She could only tolerate three types of food rice, chickpeas, and cod. And so when we she was able to finally introduce some other foods, I started to have um brighter hope that okay, her body feeding something different, it's allowing more more food nutrients in. The hope got started to get a little bright to be there. And and it it's hard it's hard to measure, you know. Uh I would describe it as watching a child fill. I I can sit here with our other children, and we don't know that they're growing taller. If someone who comes in from the outside who hasn't seen them for three months, six months, whatever it is, oh, your son is so much taller now. That's sort of how I experienced the the improvement within being there. I didn't know it was happening.

SPEAKER_00 14:56

I I I should say I should get uh I knew it was happening, but I I wasn't able to quantify it or how were your kids dealing with this at this time and like what were some of the things you were telling them, and you know, kind of how how did they help learn about what was going on and kind of help with the the growing support, you know, to help you get out of this?

SPEAKER_03 15:16

So yeah, we had two that were still at home and one that was grown. So the one that was grown was like watching podcasts and like um listening to a lot of different things online and um really involved in that way and learning. We our son was very young when this started, eight at the time, and um it was really remarkable. He was very loving, and um, he said just amazing things along the way that were life-saving. However, the mom that he had known for his life so far, um I wasn't able to do that, and it was really sad. He would make me things like he made me a brain healing helmet that he put on me, you know, in this desperation in him. I remember him telling one of his teachers, told us at a comp a parent-teacher conference, like there says that you have an incurable disease, and um, you might not ever get any better. And that just was so heartbreaking to know that he was living alongside that fear of like, is my mom ever gonna be okay? And is my life ever gonna look like something normal? And then we had a teenage daughter, and that's such a hard time to navigate in life as it is, but this just blew her life into complete oblivion. I'm very open about this experience, um, and I plan to just be fully authentic. But at one point, even someone reported me to her school for suicidal ideation, and the police came to her high school, and we were investigated by Child Protective Services. So, going from being then as a mental health professional, and I had always worked in law enforcement and criminal justice, and here we found ourselves on the other side of the beam, and that was such um there are so many feelings around that, but also very humbling just to be on the other side of what that looks like, and so much misunderstanding along the way is such a common thing. There's so much misunderstanding about this topic, this experience, and there's so much stigma around the topic of suicide and what that looks like for families, and it was scary, you know. We how do you talk about acacesia and not talk about the fact that you are acutely suicidal just about every second of every day? Somebody we would talk about this. If you're experiencing cancer, then you have a freedom to talk about openly, oh, and here's what the symptoms are. But when you're experiencing accessia, and one of the primary symptoms is like homicidal or suicidal ideation, like, wow, how do you navigate that? And um, that gets really weird really fast, and it's very isolating.

SPEAKER_00 18:22

Yeah, that's I can't even imagine. And it's so tough because you know, you want to talk directly about what you're feeling and experiencing, but it's like just telling the certain person about exactly what you want to do. It's like you're gonna get that label, you know, and you don't know what reaction you're gonna get. What would you want healthcare professionals and other providers to know about this? If if you could, you know, see a change in the way people go about dealing with this. What would you like to see?

SPEAKER_03 18:49

I'd like to see belief first and foremost and understanding that this happens to people. You know, you see commercials and there's a laundry list, including, you know, potential suicide, but you know, and it's like, but then you go and it's like, no, that's not what's happening to you. First and foremost, that this is real. This does not happen to everyone, but it does happen to some. And all of our human vessels are different, our central nervous systems, our brains, and for whatever reason, some of us have these reactions. And I just would like them to also know that for those that have um not survived the experience, they were being tortured. This is not a I have not met or talked to a single person that actually wanted to die. Um, they wanted to live, but when you are being completely tortured day in and day out, it's indescribable the need for that to stop. And I think about like, you know, it was one thing in culture when people talked about the twin towers falling and people leaping from the burning buildings, you know, that was acceptable. Oh, yeah, you know, that's understandable that somebody would choose that of the options. Well, this is no different in my mind and in my experience. It's a suffering that is not there are not enough words and human dialect to be able to relay to someone what this experience feels like. And until you watch someone day in and day out, I don't know.

SPEAKER_00 20:31

And what does sustainable healing look like to you for the long term? And and I guess I I can get Ben and on this too, you know, what role does family kind of play in in this whole healing process?

SPEAKER_01 20:42

Yeah, I I think uh speak for J, which he is mentioned about having a support system that would be uh and I think that's really the biggest thing is uh here to delete her, encourage her sometimes and so like it's truly how proud I am outrageous, just trying to help keep her going. And now that it it's not a light switch here. This is running an ultra. It's not 26.1 miles, this is like 200 plus miles you have to be prepared and ready, and it's hard to use and usually hard for myself, just realizing that whatever it it it it's it's just there's having a build impossible for the entire system. So having more people who can support you who can like step in and tail them for a little bit so that another support gets arrested and recharge and come back in and and and be ready to take out a war.

SPEAKER_03 21:57

As far as sustained healing for me, I I had to give up any notion of any type of certainty. This is a dark night of your soul that is complete uncertainty. There's no trajectory of it that is predictable. There's no, oh, okay, in four months, this is what this is gonna look like. Or we found along the way that there was no certainty of anything. And so it's a letting go that happens, I think, the longer you do this for those of us that have lived in acostisia a long time. And it's also a surrender of for me. Someone asked me one time, what do you think you have to give up to be able to survive accessia? And my response was any identity you think you've ever had, I have had to just surrender that I am not the same person anymore, and stop grasping and clinging to any form of identity. Feeling to me, I I've just begun to accept this experience the longer it's gone on and the longer I've rode beside it, that I couldn't predict anything about it. About two years in, maybe two and a half years, I actually made the decision to exit Western medicine completely. We had exhausted every road we financially could. We had seen every type of practitioner we could. Some of those interactions were traumatic and gap full of gaslighting and just infuriating. Other ones were loving and they said, We believe you, but we don't have anything to offer you. We don't know what to do. And so we really had a mix, I feel like, of both. But eventually I exited Western medicine completely. For me, we're all different, we all have different stories around this. But my story is that I started seeing an Ayurvaic Eastern medicine healer. Um, and I truly in myself felt like I was going to complete my life if I did not take some sort of action. That's where I personally got to. I could no longer sustain without doing anything. And so I started to see this healer, and I just said, I'm going to start taking herbs and different things, and I'm going to start microdosing this to try and build my body. And oh my gosh, in the beginning, once again, it was unbelievable. And I did it anyway. And we did it one second and one day at a time. And so far, I've been on much of that almost two years now. Very particular things. And it has been the volume of this has changed one tiny bit at a time. And it isn't overnight, it's not over month. It's not like Ben said, this is a long game for us. And we knew that. We've known that. And it's tested our marriage in ways we can't relate to other people. We're like, oh, you had a bad day, like, you know, it's yeah, like, you know, people talk about things and we're like thinking about how we rode in a car for a hundred thousand miles, you know, and but having said that, we're still here together, and our children are still here, and so far we have we've made it, and I've that's really what I want people to know is that it's possible. In the beginning, I um I've talked to hundreds of people all over the world. Many of them are still here, and some of them aren't. That's the reality of aphesthesia, and um, I want people to know that they can do this, that they can survive this, and that it gets better, and it won't feel like that potentially for a long while. But this, these brains and bodies that we live in are also they're incredible. And I really want to give hope to other people through us that it's possible.

SPEAKER_00 26:10

Yeah, that was actually gonna be my next question. You know, what would you what message would you have for someone who's kind of in the depths of acathesia right now? I mean, is there anything else you'd want to say about that? Or or is there anything you'd want to warn someone about, like any symptoms or or you know, any early signs of academia? Like what would you say to somebody who might be experiencing that?

SPEAKER_03 26:30

Yeah, I would say first and foremost to trust yourself. If something feels off, it's off. Trust your body, trust what's happening in your head, and don't allow any outside noise to make you abandon your own intuition and knowing of that. Um and one thing I would caution about, um I know for me, in my experience, like I have made some, I have met some people in my life in this that have helped me stay alive, many. But I would also caution people to be careful about the diet for their mind that they take on during this, too, because there were things said to me in this from people who were suffering themselves that made the situation darker and more difficult. And so just to be mindful of who you take advice from. Um, if anything I'm saying today is like, I don't think, then don't take my advice. You know, trust yourself, trust if something lands that seems like, wow, this sounds scary or is making me more unwell. When you're in terror and you're ingesting other people's fear, you know, that can really elevate the situation too. And what else is true is that these support groups save lives, they help save my life. As I was riding in the car, I'd be on the support groups for 8, 12, 18, 24 hours a day. And um also researching just for hundreds, if not thousands, of hours. Yeah. For those, you know, my situation is that I had support. That is not everyone's circumstance. Um, my heart really hurts in that way for people that that don't have that type of family support or aren't even believed. They're families. We've had some of that. We have family that hasn't believed us, that is no longer riding alongside us. Many um are no longer riding alongside us in this experience. They didn't believe me. Um, and I just want to encourage those people that are feeling like they're in the dark, like Ben said, with no flashlight and nobody's coming. I want them to just be able to hold on and to know how brave and incredible they're they are, and that there's a day that comes where it shifts just enough, but staying in the day you're in. That's it. If you if you think about, you know, people, even me talking to say, okay, I'm at four years, three months, that can be really frightening to you for people. Am I gonna have this for four years, three months? Is this gonna go on? And none of us know. I remember just being desperate for somebody to tell me when this stops, begging, screaming, crying, just tell me when this is gonna stop. And I wish I had that to offer, but I don't. Um, but to surround yourself with whatever love is, wherever you can find that, wherever you can find love and compassion that is genuine, that cling to that one day, one day at a time, and that's what we had to do. That that's how this played out, just one day at a time. And it was very much, I don't know how many times Ben has had to hear me say, I don't want to do this anymore, I don't want to do this anymore, I don't want to do this anymore, and yet it's and we're doing this today, and here I go.

SPEAKER_00 30:12

Is there anything else you'd want to say um uh that you'd want people to know about your story or anybody else who's experiencing something similar? And the same thing with Ben. I mean, is there anything else you'd want to share that you just feel like people have to know about this?

SPEAKER_01 30:26

Yeah, I I'd say I would say, I mean, and you say for anyone who's a like a support, you have to give yourself grace. You know, Katie talks about some of these these wonderful loving things that I've done. I've also experienced in the very biased moments where I've I've been itching really hard and I've been ugly, and it's not been true representative of how I want to be. And that's a product of of this whole experience is and not taking care of myself so that I could then take care of Katie. And so finding extra support, giving yourself grace, and realizing that we all have bad days, and even though our bad days may not are nowhere near the bad days someone experiencing act asia, but but that's part of it, you know. I mean during this process, Kitty and I've had some pretty pretty pretty heated arguments and um with being able to move past that realize, you know, this is the person that I love and I need to help myself behave myself and and get back on the path with her and keep off hiding. Because it's hard. We're we're over four years in and it's not for the faint of heart.

SPEAKER_03 31:45

As far as other things to know, I I mean this is this has been mentioned before, I think, on your podcast, but this is an iatrogenic injury. That's really what this is. Is a to me, it's no different than like being in warfare and in war where chemical torture is induced on people. And my experience is in Western medicine that the people that helped us get where we are, when we go see them, what they have to offer is more chemicals. And you can't dump chemicals on top of a chemical fire and expect that the outcome of that is going to be anything good. I really want to caution people about taking that advice or trying to dampen down that fire with um depressants to the system and masking acosia. And I know, I know that that can feel so appealing just to get any amount of relief, anything, anything to make it stop. But it is literally like trying to put a band-aid on a hemorrhaging, gaping bullet hole wound, and um that is still lurking underneath. I would really caution just to really be informed, inform yourself if you can. If you can't, then look to sources and people that can help get the information. I feel like even four years in, there's more information coming, there's more information coming out, there's more people speaking. You know, we're in this information age and just being informed. We trusted doctors before this. We really did. We were like many. I would caution, these are human beings that have been trained in a certain type of education, and um I I am also not anti-medication, that's not my position at all. But I am pro having all of the knowledge and then making decisions about what what should go on, and that is not something that I had or did for myself in this process. I just heard this person's word for it. Um, and I they there was no warning to that at all. There was no, it was so laissez-faire, the whole thing, you know, and then no accountability for this person. No accountability at 18 months in, 18 months in, um, one of the providers tried to re- their advice was for me to reinstate the abilify. That's what their solution to this was at 18 months in. That is so neglectable. It was so I just don't even know the word for that. That that would be what this person's recommendation would be for what we had gone through. So just to really seek out um information to make informed decisions about what you're going to put in your body as well as what you're going to do moving forward if you find yourself in this position or a family member does. I am very much an advocate as well of for me. Once again, this is my opinion. Um, but functional. Um we were fortunate. Um I had what's called a neural zoomer test, which is not given in Western medicine, and that was through a functional practitioner, and it was amazing what information it had given us after two and a half years. It was the first time we had real answers about what is going on in the brain and body riding alongside acaestesia. So it showed that I had had like a blood-brain barrier leak on top of this. Um, it it showed different levels of different things in my body that might be contributing to like when the symptoms were spiking. And so functional and natural medicine, I think, although it may not be a cure, um, I think looking at outside sources too can be helpful, at least it was for us in our experience. Going to a functional neurologist, I was fortunate to live on the West Coast where like one of the top functional neurologists in the United States lives. And um just going to him and getting answers, like they do testing completely different than Western med neurologists. And for him to look at me, I remember that day, he just looked at me and said, This is real. And I just remember weeping, like sitting there just in this weeping state, because finally someone looked at me and said, This has happened to you, this is a real thing. And um, he was able, he wasn't able to give me the cure, but he was able to give me information and feedback about my body, so then I could come home and ride in a different way alongside this body, if that makes sense.

SPEAKER_00 37:26

And another thing, too. I mean, I know you're finally returning full-time to DA's office, you know. Congratulations. What what does that milestone kind of mean like for you personally?

SPEAKER_03 37:37

Yeah, I just had my first week back to work full-time, and I it feels I don't know, it feels like all the human things. I almost can't even take it in because I am so like I'm in awe. We're doing things like I've gotten on an airplane twice. I've gotten on an airplane in the last six months, and I'm and it was rough. I still I just really had to work with myself, but I did it. I'm doing these things, and it feels like starting to be alive again, and I'm not where I want to be yet. That's the reality, but I'm not anywhere near where I started, and I plan on feeling alive again, and I'm starting to get to dabble in that and advocating in these ways, whether it's on here, whether it's a billboard, whether it's at the DA's office. This is my way of honoring um everything, all of it.

SPEAKER_00 38:42

Well, thank you guys so much for for sharing your story. So I I definitely appreciate it. Yeah.

SPEAKER_03 38:48

Thank you for having us. We appreciate you.

SPEAKER_00 38:51

You've been listening to At Cathedral Stories, a podcast from Mist. To learn more and get access to free educational resources, please visit Mist.co. Together, we can increase awareness, prevent tragedies, and save lives. At Mist, we are all for truth and disclosure, honesty in reporting, and legitimate drug trials. Thanks again for listening, and I'll see you in the next one.