Episode 6 - Stacey on living with akathisia for over 30 years

Stacey is a 48 year old housewife and artist residing in Southern California. She has had akathisia not just from pharmaceuticals, but also due to hormonal issues and what she believes was PANDAS in childhood. As a result, she has had bouts of akathisia since youth and has had it chronically since a protracted withdrawal from klonopin plus reinstatement that occurred approximately ten years ago. At the time of the withdrawal, she was wrongly diagnosed as bipolar and polydrugged. She is currently working on tapering off these medications. 

Transcript

SPEAKER_00 0:05

Welcome to Acchesia 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 acathesia, a medication-induced disorder that can cause suicide, self-harm, and violence. Our mission is simple: increase education and save lives. Stacy is a 48-year-old housewife and artist residing in Southern California. She has had acathesia not just from pharmaceuticals, but also due to hormonal issues and what she believes was pandas in childhood. As a result, she has had bouts of acathesia since youth and has had it chronically since a protracted withdrawal from clonophin, plus reinstatement that occurred approximately 10 years ago. At the time of the withdrawal, she was wrongly diagnosed as bipolar and polydrugged. She is currently working on tapering off these medications. So hi Stacey. Uh, how are you doing today?

SPEAKER_02 1:08

Nice to meet you. Um doing pretty good today. Today's been it's turned out rough, but it's getting a lot, it's getting better as the day progresses, which is very common for me.

SPEAKER_00 1:22

What made you want to speak out about this and kind of share your story?

SPEAKER_02 1:28

Well, obviously there's it's the fact that I suffer from acathesia. I wish I'd known. Well, that's not technically true because you're if you get this neurological movement disorder, it can stay with you. So it's just a way to get people more informed about what really truly to look for.

SPEAKER_00 3:06

And I know for you, you know, you've said that you've you've basically been dealing with this pretty much your whole life. Um, can you kind of take us back to the beginning and you know?

SPEAKER_02 3:17

I I can. I can, and it gets uh see, you can actually get it not just through pharmaceuticals. There's there's also you can get it through brain trauma, you can get from Parkinson's disease, you can get it from dementia. Um I personally like I remember being 12 years old and having episodes of acadesia. And for me, I personally believe what I had was um pandas. Um pandas, it's not it's well, it's not that well known about, but what it stands for is pediatric autoimmune neuropsychiatric disorders associated with strepococcal infections. Um basically like um it's more it mostly happens in childhood. It can happen in adulthood as well, but it's from strep infections that can actually like cause encephalitis within the brain. And when it does cause encephalitis, it attacks the basal gonga, I may be pronouncing this wrong, um, basal gongia region of the brain, which is affected with that controls movement. So it causes this insane restlessness. Um, one of like the the main things that like people really like point out with pandas is that children will immediately get really bad OCD and ticks, like Tourette syndrome is very common with it. And it happens like nearly overnight. And that's what happened to me in the third grade when I was 12. And um, because of that happening to me, like along with like having these episodes where I would just I had episodes of like rage, like you won't believe, and insane irritability, but there's this one main oh I'll get into it a little bit later where there's like this one episode that like really sticks out the most. But um kind of lost my my track of love a little bit. I'm sorry.

SPEAKER_00 5:52

Well, I know um, so I I believe it was Trazodone, that was the first thing that you were prescribed, right? Kind of around around that time.

SPEAKER_02 6:00

Yes, it was, but now I was getting to um the why I believe it had panthers. And it was because I developed this insane OCD and Tourette well ticks simultaneously. But not only that, but um I had an an abscess tooth at the same time, like this all occurred, and abseth is caused by strep. So when you correlate the two, it makes sense. And the thing with PAMP is like I said, it attacks the bench basal against the uh region of the brain. If I'm correct, hopefully I'm saying that correctly. But um, and that's actually the same region that's affected with acadesia. So acathesia is also a component that you can get with pandas. And I just remembered as a child that things weren't right. Like I was just crawling out of my skin. I was afraid of literally everything. I had this massive fear swallowing, petrified. Like I always believed that like I would choke on food. Like for a while, I would like have my mom make me milkshakes, and that was like be all I would eat. It was it was really bad. And like eventually I was just like, Mom, something's wrong. So she's I went to the doctor, and this is like what really sticks out is I was in the waiting room. And when I was like, I there's like a Charles magazine back in the 80s highlights, you know, that had like little puzzles and whatnot. I remember I was like looking at one of them, and I like I couldn't even like hold on to the magazine, let along, read it or do anything. I was like restless, and I started pacing. And I was just screaming, where's the doctor? Where's the doctor? Where's he why am I waiting? Why, why, why? Like I became insanely restless, just like screaming and pacing throughout the waiting room. And like I like looking back on it now, like the level of restlessness and distress, I know that was academia, and that would have been my first case when I was 12.

SPEAKER_00 8:32

And then kind of fast forward a little bit to you know, senior year of high school. Um, and what were you kind of like during that time, you know?

SPEAKER_02 8:42

Well, like I said, um the pandas creates very extreme OCD and ticks. And for me, I had the OCD was progressing into harm OCD. It used to be I was always afraid that I might hurt myself, like I was afraid anything that could be perceived as like sharp or a weapon, like met like chemicals around the house I was petrified of. But then it started getting towards I started thinking with my harm OCD, maybe possibly I could harm on other people. And that's when I had, I mean, I had absolutely no idea what OCD was, what was going on. I literally like thought I was a sociopath or schizophrenia. I like didn't know what, you know, I just thought something was like really severely wrong with me. Once again, I went to my parents saying, like, something's really incredibly wrong. There's something massively wrong with me. I need to be put somewhere. That's literally what I said. And my parents ended up um taking me to an inpatient um at a hospital. And that was the most traumatic experience of my life. Um, so I might get a little bit emotional. Like I can I can talk about it, but it's a very traumatic. Um basically I was there um senior year of high school. Um it was right, I was there during my 18th birthday. So I probably like went in like a week before my 18th, when I was still 17. Even though when I was at even though I was an adolescent, I was put on the adult ward because I was turning 18. But while I was there, they literally put me once seven different medications within the span of ten days, and that caused extreme acadhasia. Um I can list the meds, like I actually remember what they were. Um let's see, they had me one Prozac, Wellputrin, Nortriptaline, Respiridol, Mellaryl, Trazodone, and Adavan. The Adavan and the Melaryl were the ones that they kept me on like the entire stay. The other ones they just kept like having me on this for a day or two and then switching me. But and I had very like stereotypical motor, well, both motor and internal acadesia, where not only did I feel like I was gonna jump out of my skin, but I had to like pace endlessly. I found I could not sit down to save my life. Like, even during meals or during like groups, I would have to stand up. I literally could not sit down. I was just screaming at all the orderlies, like, I need help, knock me out now, get just help, you know, just screaming for help. They couldn't really do anything. And these were medications I didn't want to take. And well, actually originally I was okay with like taking the per sac, which was the first med that they gave me. But the funny thing is they actually kind of gave me a little bit of a warning before the meds, which is very rare. They actually told me that the antipsychotics, which it's kind of weird. I was actually told it wasn't my metal rail was an M Ao I. But they still warn, even though it isn't antipsychotic, but they actually didn't warn me about movement disorders. And but the way that they worded it, they didn't really like get a grasp into it sounded like they were like kind of describing dystonia, but getting it wrong. Like they were saying, well, basically what would happen what can happen with the side effect is like you'll try to like move your your limbs a certain way and it'll move the other way. So it sounds like they were kind of trying to explain dystonia, but I was petrified. Like the second that they started describing that, I'm like, and they even like said it it can stay with you and not you you won't be able to do anything about it. I'm like, I do not want to take this med at all. And they said, Well, if you don't take these meds, then you might not get out here. We we might we'll keep you now. Being young, I didn't know if they were talking about temporarily or permanently, you know, like I've never been a psych hospital before, I don't know how they work. So I was just like, you know, so the fear in me of like I want to get out of here, you know, I took the meds, and lo and behold, yes, I because they put me on seven different meds, you know, I ended up with acadesia. And in that time, the worst thing about it was I honestly did not sleep at all for like for at least nine days. And when I did not sleep at all, I mean I didn't didn't even close my eyes. And I was so petrified of the meds and what they were doing to me that I believed that if I closed my eyes, I would die. And I would even tell that to the doctors, and they would keep trying to give me chazidone to sleep, and I wouldn't take it because I literally thought like if they gave me another drug, that was it. And I do remember like collapsing once, just from all the meds, like my blood pressure got really low, and but there was also a lot of abuse in the hospital, like mistreatment. Um the biggest one, apart from like just being given all these crazy meds, was apparently what had happened, and I don't fully understand why it led to what happened, but apparently my doctor, the pediatrician from the ward, he went on vacation, and I don't know like what the staff thought, but they just like had a free for us, you know. And I was on a suicide watch because I developed the academia. I'm like, I need to like this need to stop. I will kill myself if this doesn't stop. And what they did was they put me in the quiet room, and the quiet room consisted of absolutely nothing, just completely bare except for a yoga mat. I did not have a pillow, I did not have a blanket, just the yoga mat. So it was bad enough I had academisia if you think anybody can sleep in that in those conditions. And worse yet was there's a there was a girl that was probably around my age, that was her, I remember like her story, her father molested her, you know. And they kept her like every night she was there was two quiet rooms. There's the one I was in and one next to me. And she would always be like tied up to a gurney, they would give her an inject some some med, and she would just scream all night long. And I would just be hearing that screaming the entire time I was going through what I was going through. And there's also they also had um, I obviously didn't have Dante Mang, but there was this one lady that was bipolar that was having ECT. And there's an ECT room. I don't know what in God's name made them think about like the location of it. It was pretty much like adjacent to where like the eating area, the activity room was. So basically, like two, three times a week, however often, I I don't remember however often she had ECT. It was just this one lady that was getting the ECT. She would go into the room, and after each treatment, she would rage out and start attacking all the doctors, everyone around her. So I saw a lot of just I wasn't the only one like being harmed. There was people around me as well.

SPEAKER_00 19:10

And when they were prescribing you, you know, these seven different medications, did they tell you like what each one was for? I mean, it kind of seemed like or was it like a kind of like this prescription cascade where you know one does this and then you get this, so then now you're gonna be prescribed this, or you know, and no mention of the word akathesia, I assume.

SPEAKER_02 19:33

Surprisingly enough, they did. Which is really strange because I've been hospitalized numerous times, and ordinarily they do not. And this was in the mid-90s, too. So it's it's very surprising, but they actually did like tell me the different what classification of medications I was on. Although they did get the Mellaril wrong, they told me it was an MARI inhibitor for some strange reason. But they did tell me, but it was a case of yeah, we're giving you these meds, but if you don't take them, you're not getting out of here. So you're stuck, you know, you don't really have a set. And you're underage anyway.

SPEAKER_00 20:20

So, and then eventually you you did get out, and when you left, um I believe the only medication you were on at that time was Zoloft, or was it anything else?

SPEAKER_02 20:37

Um, no, actually I wasn't even given Zoloft at that point. Um, what they kept me on was the Ataban.

SPEAKER_01 20:44

Mm-hmm. Okay.

SPEAKER_02 20:46

And yeah, basically, as soon as I got home, and like my my folks like saw that they were like giving me medications and whatnot, it went in the trash. I was just like, I I can't take these medications. And what happened when I got home, like I basically still had acadhasia for like two weeks after getting out. That's how long it took for it to wear off.

SPEAKER_00 21:14

Mm-hmm. And so, but at the time, I mean, still no mention of the word acathesia.

SPEAKER_02 21:22

You know, you you didn't know not acathesia, no. They did mention movement disorders, and they gave me that not too accurate description that I think they were trying to it to me it sounded like they were trying to describe customia, but that was it.

SPEAKER_00 21:43

So you you threw away the adamant.

SPEAKER_02 21:46

But this is a strange thing though. I I'm sorry, I didn't mean to cut the case.

SPEAKER_01 21:51

That's okay.

SPEAKER_02 21:52

The strange thing though is I got the movement disorder, and then they looked before. They're like, oh, they kept like saying, Oh, you're just doing this for attention. Where like they knew they told me this didn't create a movement disorder. I got the movement disorder. They did nothing to stop it. They just gave me more drugs. I was actually put one to Zoloft like immediately after the hospitalization. Okay. What happened was I was still asking for help because I was like, I had no idea what the harm OCD OCD was. So I was still begging for help. I actually ended up literally running into just the psychiatric office, like crying. And they called my folks and was like, yeah, your your daughter, she needs help. And I ended up speaking to one of the ladies. And I I I mean I let it all I was like, I'm getting these feelings of hurting people. I don't know what the heck's going on. And she just looked at me and goes, You have OCD. I go, OCD? What's that? Isn't true so thoughts? They're not something that you would act on. They just basically you ruminate on things that are like deeply troubling. And you know, she explained it, and I was like, that's exactly it. And I felt like this massive relief because I finally knew what was going on. And she like said, Yeah, like two percent of people in the world have this, like one in 50. There's probably other people, other classmates of yours that have it. It's not uncommon. And I like finally like felt like I wasn't like this crazy, you know. And the thing was, I told the same story when I was in the hospital to a nurse, and the nurse looked at me and said, You're sick. Just like that. You're sick. And that made me feel like that was crazy. And that's when they put my on the Zola. And the thing was when I was put on the Zola, I was told that I would have to be one of her life. And I was 18. So it was just always prescribed to me. No questions asked, you know, like when she's gonna get off of Zola. It was just so that was like the first medication I was consistently on. And I'm still on it to this day, and it's been 30 years. I'm completely, completely dependent on it. If I just so much as miss a dose, I have the worst acadhasia imaginable. It's because I was literally told, you gotta stay on this for life. You got OCD.

SPEAKER_00 25:29

This is what fixes you, you know? And and so when you were first described Zoloft, um before you said you were feeling maybe kind of lethargic, and and you know, have you kind of felt those feelings change, you know, whenever you were kind of changing the the the amount or anything?

SPEAKER_02 25:52

I don't see I've been on it for so long that I mean there were times when I was on like the lowest dosage, and there was one times when I was on the maximum dose. But I remember, yeah, it made me very lethargic. Like I would just nod off continuously. I could not stay awake for the life of me. Like I would literally go to other people's houses, like I go visit my relatives, I'd fall asleep on the couch. You know, that was like the normal thing that Stacy did was Stacy has to sleep, she's out, so it was very hard for me to stay awake. But the scariest thing was um driving. Like I actually like fallen asleep at the wheel a couple a couple of occasions, and the worst was oh god, there was this one time I remember um I used to perform in a band um with an old um boyfriend. And I was actually in the process of driving to band practice to his house, and I basically like had a fugue state. I had complete um this at the time I I think I was on like the maximum doses of so low, like 200 milligrams. I remember I was on a very high dose, and I just had no idea where I was, where I was driving, even though I was like going like towards his house, I couldn't figure out if I was going towards his house or if I was going towards my house. Like I didn't know which direction I was going in, didn't know what day it was, I didn't even know what time of day it was, even though it was bright out. Like I was still like, is it nighttime? Like I did I just had amnesia for like and it actually I don't know how the heck I did it. I actually ended up driving to his house. Like at some point, like I called him, it was just like, where are you? We got band practice, we we got that gig in two days, get over here, you know. So somehow I managed to like get to his house, and even like when I was at his house, I was completely disoriented. Like, I'm like, what is this gig he's talking about? Where are we performing? What am I doing? Like, like it was almost like being in like a dream state, but just not I couldn't like recall anything, and it stuck with me. I was still like that for like two days, where like I just couldn't remember like the most basic of things and just was so disoriented. Like I okay, so um basically when I was 25 years old, um I was put one clonipin, and the reason why I was put one clonapin was the most insane reason I was actually roofied when I was 25. And apart from being roofied, I did escape the attack that I had really bad academia that lasted like a good two weeks. I didn't really know it was I didn't know it was acthesia at the time, though. I thought I had really, really bad anxiety. They ended up putting me one clonapin, which is probably like the worst thing you can do. Like you you're roofied, you get, you know, you're you got acathesia from one benzo, and then you put you on another benzo is basically what happened to me. Um so they put my one clonopin and they didn't like tell me like how addictive it was or whatnot, and basically I just had doctors just prescribe it to me throughout. But um eventually in my late 30s, I was having trouble getting pregnant, and you know, I was trying to get pregnant, and I was told by my doctors, well, you're on chronic, you can't be on this. You you need to come off of it. And so I went to my doctor, told her, I plan on getting pregnant, I can't be on this. So she came up with a taper plan. The taper plan was basically what she did was she just took my pills and split them in half every couple of weeks, like very rapidly, and I had protracted withdrawal. That is what caused my like basically the level of academ like I had chronic acadesia to this day, and it pretty much started with that instance of getting the protracted withdrawal from Clonatin. But what also happened that also contributed to it was I was sent to a residency, and they thought that I had what they labeled dysporic mania, which actually happens a lot in cases of acathesia. It's a common misdiagnosis. Um and because basically they thought I was bipolar, so what they did at this residency was they polydrugged me like crazy within the span of six weeks. Like once again, like I was as a child, they just gave me, they put me like at least one five different medications, and those medications like I was able to taper off of one of them, and to this day I'm still stuck on the other four, and that's why I myself am still dealing with acadesias because I was given all these medications, I became dependent on them, and as a case of like having to taper off of them. I've been hospitalized at least 40 times. I've been in two residencies, and it's like every time you go in, it's like one doctor's like, let's go up, and then another doctor's like, no, this might be harming you, let's go down. Like they just guess, you know, they're just like, let's just tweak it somehow and let's see what happens, you know. So it it's got it's gone up and down, up and down, but of course, once I found out like that I had akathesia, then I I tried going down as much as I could on medications. And I am on a lower dosage now. I'm like, I'm 175, and I've tried cutting it, and like I said, if I just so much as like miss one day of that soul off, I will have really bad acadhasia. And I'm also on um I'm currently on Remron now, and I noticed the same thing. Like I can well the funny thing with um Zolemps is I can't go up on it either. It actually gives me tachycardia if I go up any higher in 75. I've noticed that. Um with Remron, like if I go up on it, I don't have any extra symptoms. But if I I've tried microtapering it like 5%, and even then I get the worst acadhasia. It's so that's one thing is like a lot of people know that acadhasia is it's basically low dopamine in the basal gangia region of the plane. But there's obviously other things going on too with academia that I I don't believe for a second that it's just dopamine really, because a lot of people get it from antidepressants, they get it from my god, I've heard of people get it from hormone replacement therapy, people get it from antibiotics, people get it from just many different meds. So it's it can't just be dopamine related to me. It needs to be probably something else that's more to it.

SPEAKER_00 35:19

And out of all the doctors that you've seen, um, how many of them have recognized acadesia?

SPEAKER_02 35:27

That's the crazy thing. Like, I I'm 48 years old now. Um all this chaos started when I was 12 years old, and within that period of time, I would say three doctors that you've ever seen. Like when it comes to hospitals, like I said, I've been hospitalized at at least 40 times. And only one, only one doctor looked at me and was like, you have really severe, you have really, really severe acadhasia. Um, we need to cut you down on some of these medications. He actually gave me um artine, and I had talk about like amnesia, memory loss. I did have that with artine. But that's common with arte. But oddly enough, like I went like a good three months without acthesia after taking it.

SPEAKER_00 36:29

And when was this? So this was like the first time you actually heard about the word acathesia after however many years of of just not I actually I actually knew about acthesia earlier than that.

SPEAKER_02 36:43

I have absolutely no recollection of when I learned what akathesia was. But I didn't know what it was at the time, and he was just the one doctor, like every other place, like I would constantly like say, I have acadesia, and he would be like, mostly what it would be is earlier. I mostly had like the inner restlessness, but I can sit down, like I'm sitting right now. A lot of doctors they'll see you sitting, and like the main definition of acathesia, I forget like um what the Greek name means, but it has something to do with sitting, you know, like the inability to sit. So the majority of doctors they think if you're sitting down, you can't have acathesia, like you need to be pacing 24-7. So they'll just look at you and like you're sitting down, you don't have academia. That's what like they would all say, except for this one. And like I have a nurse practitioner now that specializes in benzotaper, and she she put acadesia down as like my main symptom. She's she's excellent, like that. Um and I've had like a couple, like one or two other nurse practitioners or psychiatrists that were like, yes, you do have academisia. But I mean, when you look at my background, where I probably have seen like 200 different doctors and like only three of them recognized it.

SPEAKER_00 38:34

If you were going to give you know some advice to a lot of those doctors and medical experts about acadesia and you know and whatnot, what what would you want them to know?

SPEAKER_02 38:46

They need to understand that it's not just motor restlessness. Basically, acadhasia, to me, at least, is extreme profound restlessness. But that can present either internally or externally. Like you can have the motor features, but you can still have that feeling of like calling out your skin, bugs crawling all over you, just raging out, just the the suicidal thought like this needs to end now. Like, I'm just being in so much distress. It's it can present in so many different ways. But I actually um I do have I did want to say something um for people that like are having a really hard time getting their doctors to listen if they do present these symptoms. The thing about acathesia is doctors will like they'll either say that they don't know what it is, or they'll just think it's like it's either only acute acathesia, like you you if like if you take a antipsychotic and you get it right away, they might recognize it, but they don't recognize it if you've been on like a med for a period of time, or even if you're on a med that's not an antipsychotic because so many different medications can call us. This is one thing I believe everybody should know. And this is the DSM and the ICD codes for academia, because it is actually written in the diagnostic manuals, it's there. So these are the codes. So it's like if your doctor doesn't listen to you, just say these numbers to him and be like, okay, this is the diagnostic code. Please go to your book, it's right there. Okay, so the DS75 code, if you're in the US, 333.99. The ICD 10 code, if you're outside of the US, is G25.71. Okay. Remember those codes?

SPEAKER_00 41:11

And we've had other people on the podcast kind of talk about genetic testing, right? And and and metabolizing and stuff. And I know you you took the gene site test. Um and and then you kind of found out that you were a low metabolizer. Um can you kind of talk about that experience? Like what what kind of made you want to take that test and figure that out? Did someone point you in that direction? Or how'd you come across that?

SPEAKER_02 41:41

Well, a doctor did recommend it to me. I ended up I actually took it a couple of times, to be honest. Um and it didn't show that for me, um, I am a slow metabolizer, in which case, like medications build up in my system. So um, I basically like I'm the type of person that would need lower dosages. Like they can build like when the meds build up and build up and build up, of course, that can I, you know, I basically just end up getting too much of the medication in my system, which of course can lead to academia that might be like a component of why.

SPEAKER_00 42:32

And at what point did you want to start, you know, connecting with other people who might be experiencing this? And I know you've started a YouTube channel. I mean, well, you've had a YouTube channel for a while now. Um, what kind of made you want to start documenting your academia?

SPEAKER_02 42:48

Um basically a lot of it is just so people don't feel select alone. Um another is hopefully I'm hoping not just well, I mean, it's great that like people such as myself would see it and be like, oh, I'm not alone. Also, like hopefully like people in the medical field might see it and learn a bit more, you know, about how yeah, this isn't just antipsychotics that cause this. This is many different medications. Um, there's many different symptoms that people can have from pacing to suicidal thoughts. I actually have a list right here, like some things that you can like look for that acadhasia can cause. Um, like um, like other ones I forgot to mention. Well, like do you get like these variants of like extreme terror and dread? Um you get muscular tension and and ticks. That's actually something I do when I get really bad. It's like I get these muscles. spasms and I think what it is is like the aphidsia just causes like your muscles to kind of lack up like you know like if you're really stressed and it just that's like the way that re relieves it is just through um it can cause memory loss confusion brain zaps electrical current type feelings a lot of people say that they i i even have experienced this it's like a feeling of like an internal vibration like you just like feel like you're kind of shaking even when you're motionless like for me it happens a lot at night like I'll just be lying in bed it just literally like feels like I'm shaking you help tremors um hyper awareness to senses is a big one um like I have I personally get really bad photophobia at times where like I just become really sensitive to bright light like sounds can like seem piercing that when you know just um sensitivity to heat's common pressured speech like you can start talking like really fast because one thing with academia is like with the restlessness you become you can't wait like you become really impatient like and it's just it comes out as like this pressured speech where you just but also one thing I personally experience is like if I'm having a period where my academic is really bad it's kind of like a defense mechanism that my body does is that it does the opposite where like I'll go into free states I'll completely shut down and like I won't like there'll be times where I'll literally go mute like I literally cannot talk um it becomes really difficult for me to do anything. Sometimes I'll even like just be sitting there for like a couple of hours unable to do anything. It's really scary that's um agoraphobia and monophobia which is the fear of being alone with one like not having somebody around with you those are very common.

SPEAKER_00 46:25

So those are all things to look out for that those are symptoms of academia and how's you know um your friends and family I mean how how have they been with this all all these years you know just knowing that you've been on and off different medications and and I'm sure you've told them about acadesia and um how have they kind of responded to that it's very isolating because people don't really tend to grasp what's going on.

SPEAKER_02 47:02

A lot of people they hear oh well it's like meds called this so it's a psych disorder well it's not it's neurological you know so people tend to like treat it like I know like with my own friends and family a lot of them would like think that it's just I have really bad anxiety and that's not the case it's it's it's a sensation that like it's almost impossible to explain unless you've gone through it yourself. If you go academia at WordPress they describe acadesia excellently and it's very descriptive um there's also the acadesia alliance has a website that has a lot of useful information. Those would be like the two that I can like think of the most of course MIST has a lot of great information. You guys have that one hour course that's excellent it's free you know so if somebody does have like a loved one with acadesia they can really learn a lot from that.

SPEAKER_00 48:29

And I guess kind of going back to the petition so you you started this petition on on change.org and I know it's getting some traction and there's a bunch of people making comments about it you know and um how how has that experience kind of changed the way you interact with other people who have experienced academia and and I guess it kind of helps makes you feel more connected to that community I assume.

SPEAKER_02 48:52

Yeah I mean there definitely has been a lot of out a lot of people that have been helping which is outstanding um it's a great I I've noticed it's a great way for like the there's a lot of different communities when Agathasia and like a lot of people have been connecting to the um did you want me to talk a little bit about the petition itself? Sure yeah so the name of the petition is require black box warnings to explicitly name and describe academia um you can link to it through www.change.org slash academia warning and basically what it's asking for is right now um when it comes to black box warnings there are black box warnings for suicidality and homicidality but they don't go into length so what you're left with is people will people won't be warned about there being this movement disorder called academia so some of the reasons why I made the petition is for one um people will see the suicidality and they'll just think okay well this is probably just my medication causing me to become depressed more and well that's not necessarily true because it's a movement disorder and when you take even if you were to stop the medication it's gonna stay you know a little bit it's gonna stay with you. Um I actually had to have I'm sorry I'm kinda bit list. Um that's okay yeah another reason is because people don't know how to look for the academia it doesn't say that it's a movement disorder to look out for it doesn't tell one you to like look for pacing or to look for this extreme restlessness. So basically what I said um is what I want this is what I want to be replaced instead of the suicidality homicidality is that it says instead replace it with acadhasia a psych a neuropsychiatric movement disorder linked to suicidality homicidality so people can like connect the dots okay so this is the reasoning why I felt that black box warnings that specifically state acadhasia is important instead of ones that just say suicidality homicidality and nothing else and these are the points that I put out within the petition one should be informed of the risk of developing this condition in the absence of clear warning patients and caregivers may be unable to recognize early signs of academia such as pacing severe inner restlessness and an ability to remain still delaying identification and appropriate intervention. Two not listing the disorder itself is misleading as it gives you the illusion that side effects can be reversed simply by no longer taking the med. This is not always true as the disorder in thoughts can remain upon cessation of the med as the disorder can still remain three not listing the disorder also creates the belief that these thoughts are purely psychological in nature and may be the result of the condition that the meds are being taken for this is in fact a new condition of the acathesia caused by the medication and number four not being opaque to what could be causing this suicidality homicidality may prevent timely recognition of appropriate care.

SPEAKER_00 53:31

Is there anything else that you want to say to anybody who's watching this who you know might be experiencing acthesia maybe they don't have other people to reach out to and and um they're looking for other kind of guidance any any other words that you'd you'd like to give them um well the thing is there is always hope.

SPEAKER_02 53:58

It always the thing with anithesia is it seems like it's gonna last forever but the truth is once you do taper down the meds that are causing it and you have to do it really slowly that's one thing that I really want to stress is that um basically when you type or meds do it by percentages not just by and do it very gradually like five ten percent is probably the max but the thing is although it can be really really intense at first once you do taper down you will level out and things things do improve like the body does heal the mind heals um one thing I hear a lot about is people consider acadesia a type of brain damage well that might be quasi true in the sense of neurotransmitters but the thing is your brain structure hasn't changed any it's still there it's still in other words like I mean there are people that have survived car wrecks you know that had like really severe brain trauma they heal even though your neurochemistry from these meds have been altered within time they can resort back so what kind of helps you I guess power through or get your mind off the academia I know that's you said that's your artwork behind you so you you're you're an artist um do you you do anything else that kind of helps all I do that's basically all I do is um I always need to be doing something because if I just if I just sit there I be not only because do I become restless because I just like feel like I have to move but like my I just get like there's ruminating thoughts that just will drive me crazy. So I need to do something that not just gets me moving but also distracts my mind.

SPEAKER_00 56:31

And for me it's artwork that just if I'm concentrating on that it helps me to keep my thoughts away from the ruminations well great you know we appreciate you sharing your story with us um I know it's definitely a lot to reflect on and and and share but you know obviously it's it's great so we'll we'll put a link to your YouTube channel below so people can go watch um and uh link to the petition as well but uh but thank you so much for the interview it's it's it's been it's been an inspiring and really really really informative so okay well I thank you very much 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