Episode 8 - Cael from the PSSD Network

At 19 years old, shortly after moving out of his family home, Cael began experiencing severe anxiety and panic attacks. Seeking help, he turned to his longtime family doctor, who diagnosed him with Generalized Anxiety Disorder (GAD) and prescribed Lexapro. Cael was not informed of the potential risks or side effects. While the medication initially brought relief, it soon led to emotional numbness, social withdrawal, depression, and persistent suicidal thoughts—symptoms he had never experienced before.

Over the next several years, Cael was prescribed multiple psychiatric medications, including Lexapro, Effexor, Zoloft, Pristiq, Seroquel, Mirtazapine, and Cymbalta. With each treatment, his condition worsened. He experienced severe emotional blunting, cognitive difficulties, sexual dysfunction, insomnia, panic attacks, and escalating suicidal ideation. Despite repeatedly reporting these symptoms to medical professionals, his concerns were often dismissed or attributed to underlying mental illness rather than the medications themselves.

At age 21, after discontinuing Zoloft, Cael experienced a prolonged withdrawal syndrome that left him struggling with extreme anxiety and insomnia. Eventually, after taking Cymbalta, he developed severe and persistent sexual dysfunction, genital numbness, emotional numbness, and a profound loss of pleasure in everyday life. A urologist later diagnosed him with Post-SSRI Sexual Dysfunction (PSSD), and he was also diagnosed with idiopathic neuropathy.

Now 23 years old, Cael continues to live with the lasting effects of these medications. His story highlights the challenges faced by individuals who experience serious adverse reactions to psychiatric drugs and underscores the importance of informed consent, patient advocacy, and greater awareness of conditions such as PSSD.

Transcript

SPEAKER_00 0:05

Welcome to Acadesia Stories, a podcast from Myst, the medication-induced suicide prevention and education foundation in memory of Stuart Dolan. Myst is a nonprofit dedicated to raising awareness by Akithesia, a medication-induced disorder that can cause suicide, self-harm, and violence. Increase education and stabilized. In this episode, MIST looked beyond academia to share a story from the PSFD community. It shows how medication adverse effects such as emotional blending, loss of pleasure, and reduced physical temptation can deeply affect a person's physical and mental well-being. Like acadhasia, PSSD has been associated with suicidality and suicide among sufferers who were not clinically depressed nor suicidal prior to taking the medications as prescribed. At 19, shortly after moving out of his family home, Hale sought help for anxiety and was diagnosed with generalized anxiety disorder. He was prescribed several antidepressants over the next few years, including lectopro, affector, zolo, critique, and thymbolta. Instead of improving, he developed severe emotional numbness, suicidal thoughts, insomnia, cognitive difficulties, and persistent sexual dysfunction. After Tymbalta, he was diagnosed with post-SSRI sexual dysfunction, PSSD, and idiopathic neuropathy. Now 23, Cale lives with these lasting injuries and shares a story to raise awareness about informed consent, medication risks, and the need for greater recognition of PSSD. Hey Cale, how are you doing today? Good, how are you? Pretty good, pretty good. So why don't you uh kind of take us back to the beginning? So when you were 19, you moved out of your family's home, and I assume you were in college at the time, right?

SPEAKER_01 2:04

Yeah, I just barely started. Yeah, it was kind of like the summer before. Yeah. I I but I take classes before, but yeah.

SPEAKER_00 2:12

And um, I guess shortly after you experienced kind of your first anxiety attack, which eventually led to you getting prescribed Lexapro, right? Can you kind of talk about that like experience and and what was that like? Sure, yeah.

SPEAKER_01 2:25

So I mean I hadn't had anxiety before, anybody has, and just like it just like wouldn't go away. I don't like trying to exercise, trying to have like some things to calm myself down, and I was like, it's not really helping with anything, like it's not really helping me. So I went to my like family physician or like my primary care doctor, and I talked to him. I was like, hey, like I've been really anxious lately, kind of told him myself like what I've been experiencing, and he was like, Well, it sounds like you know, general general anxiety disorder, and I'd be willing to like prescribe me a medication that like helps a ton of patients, and there's not really any side effects, and like he's like like most of my patients tolerate like really well. And I was like, Okay, sure. Like, I think he he might have told me it was LexaPro. It's like it well, I know it was Lexaproma. Like, I don't even know if he really like told me it was just like a medication that helped my anxiety, and like there wasn't very many he didn't really talk to me too much about like what to expect. So I um wait, I filled the prescription and then just started taking it that day. And then I remember um like later that day after I had taken it, like I just felt like really good, like euphoric, it just like felt really like positive and like all the anxiety and my worries had kind of just like gone away. So it was like really like a big relief for me. And I was like, man, I'm glad I like went to my doctor and talked to him about it. Like this was such a good idea. And then like as a couple of weeks went by, as I kept taking it, like I started getting like weird, like like subtle like thoughts in my mind, like, oh, I want to die for like no reason. And I was like, this is so weird, like I've never felt this way before. Like, what's going on, you know? And I just kept kept taking it, and it was like every single day I felt suicidal, like every single day. But I he never told me it could be the medication. I thought it was just like mentally, like I was having like mental breakdowns and stuff, like I thought it was just like like part of you know, like living. Like I just thought it was, you know, what I was going through like mentally. I didn't know it was a medication, and so I just had taken it for about a year, um, or maybe it was like six or seven months, and then I I uh um ended up texting my stepmom and because she's a coworker, like they work together at like the same office like clinic, um, and she talked to him, and he uh told me that they should up the dose because I I think I was all like 10 milligrams, and he was like, Well, obviously you're having like you're feeling depressed, like these are like symptoms of depression. He's like, We should up the dose to the maximum dosage, and that should help you out, you know. And then I like I think I went in and wanted to discuss it further with him, and that's when he like I brought up uh like these sexual side effects I was experiencing. It was more of just like it took longer to climax, and that was about it. Like, just I just noticed that and I kind of brought that up and he's like, Oh, that's really common on these medications, like it's nothing really to worry about. I was like, okay, you know. Um, and so then I uh uh just kept taking it, and then he added um, I think that same day he added effects or when he upped the dosage to 20 milligrams of Lexapro, he added affects her. And I'm not sure the exact dose that she added for effects or but he started beyond that as well.

SPEAKER_00 5:32

When you first prescribed Lexapro, did he really get into details about the side effects at all or anything like that?

SPEAKER_01 5:37

I mean no, not at all.

SPEAKER_00 5:39

No, not so so so no no other tests. He didn't say you maybe we should try this or like you know, check this. He just prescribed it to you. Um and then about how how long after that? Because you said you were taking about like six or so months uh before you went to the next visit. So about how long after you first started taking it, did you start feeling like those kind of like sexual side effects?

SPEAKER_01 6:02

Um I honestly didn't even think about it really. It it was probably a couple months in when I started like noticing a little bit. But it wasn't anything crazy, just a little bit. But then um I really noticed it after I started a flexor. Like it just like I really noticed it. Like it took longer than climax. And that was about it, essentially. That's like the side effects I I experienced. And then just like all the other ideations and all that, like like lingered when I was on it, um, and I didn't know, you know, so I just kept taking it. Like I honestly didn't really see him after that for like another year. Like he just kept sending the prescriptions and I just kept filling them. Um and then Uh-huh.

SPEAKER_00 6:38

And and and and you're so you had suicidal ideation and different thoughts that you you never had before and then kind of just came up out of nowhere. Yeah. And and and so were you kind of telling your friends about this or your your parents, like, hey, I'm having these thoughts, and it's really weird, or yeah, like um, I noticed I was just like, I felt unmotivated.

SPEAKER_01 6:59

I'd never in my life been depressed before. Like, I've been sad, you know what I mean, but not like every single day feel like depressed, like I don't want to live. And so I was like, what is going on? Like, this is so weird, you know. Um I didn't really talk to my family too much about it. I told my dad, like, I was like, something's going on. Like, I think I need counseling and I tried a therapy for a little bit, but I was like, I didn't really see the point because I was like, I felt numb. Like I emotionally I didn't notice, like I just felt numb and I wasn't really getting like a lot out of like not like fully numb, like I could still experience emotions like sadness, obviously, like big time, like just feeling depressed. And but yeah, like it was just really weird and eventually, like, yeah, like I said, like a it was probably a year and a half later, like my friends kind of started noticing things that were weird about me, but then like after a while, like I kind of told them I was on like some psychiatric medication, and they're like, really shouldn't be on it, like it has like a lot of side effects, and that's what it kind of like clicked. I was like, you know, what if it's you know, like the medication and it's not like me that's you know the issue, right? And so I was like, I just want to stop it, like I'll just stop it cold tricky. So I was like, I'll just stop taking it. So after a few days, I started feeling irritable, like irritated, and just like I don't know, the ideations just never went away. Like for probably a year later. So I did we're like six six months later, I just had ideations and just kind of felt irrit irritated. And I was like, man, like what's going on? Like I thought it was the medication, you know. I stopped it and like I still feel this way. Like, what's going on? And so I went to my school counselor and I talked to her for a little bit and I was like, hey, this is what's going on. Like, I don't know what to do. And she was like, You need to be on something, like you have to be on medication. Like, like it's obvious you need to have like these issues that need to be medicated toward. And I was like, Okay, like we didn't really give therapy like any like it was like a lunch session of therapy, and she was already like, You need to go back on a medication. Because I just don't think she knew how to help me.

SPEAKER_00 8:56

So you were on Lexapro and Effects or but then you stopped both of them cold turkey, or it was just correct, correct. And you still kind of felt those those different thoughts and kind of felt down and whatnot. And were you still having those kind of sexual side effects at that time, or did anything change?

SPEAKER_01 9:11

Did it it had it went away like after I stopped the medication? Like it went away, it kind of it went back to how it was, like there was no no issue in that record. It was just more like the ideations of stuff lingered after I stopped. Um and like I didn't know anything about like protracted withdrawal or anything like that. Um I just thought it was me, right? And so I uh I went to um well, no, I I eventually just told my parents and I was like, hey, like I'm feeling this way, like I don't know what to do, you know. And they're like, oh, like you need to see a psychiatrist, like you need to see somebody that can like really like figure out what's going on and help you. I was like, okay, like I think that's a good idea, like they would have a much better idea than just like a primary care, you know, physician. So I looked under my insurance and found a psychiatrist, and then I just scheduled an appointment and I went in, told them my issues, like what had been going on, and he was like, Well, like there's this medication that's called Zoloch that a lot of my patients like tolerate really well. Like, they don't like I don't have too many complaints on it, like I really think it would help you. And I was like, Okay, like I I'm willing to try it. So he's like, Yeah, you just start on 25 milligrams, set up yourself to 50, and then we'll just go from there. And so that's what I did, just started taking it, and then the same thing, like I felt like even more like suicidal ideations when I had started and I kept taking it, like than even before. And I was like, what is going on? You know, and so kept taking it, and then I upped the dose like he told me to, like, after a few weeks, and then I was just on till 50 milligrams, and it was just like a nightmare. Like, like I didn't want to live all the time, like I was just trapped and I didn't know how to tell anybody what was going on because I was scared like that like I was gonna get like put into a hospital or something, you know, and I didn't want to lose, you know, my freedom basically. So I just kind of kept it to myself. But then over time I was just like, this isn't helping me. Like I I don't know like what to do. And so I I just stopped it. Like I I think I I learned a little bit about tapering, like nothing too much. I was like, oh, I just like split the dose like over like a couple weeks, and so I just like broke the pills and just like got myself off and so loft, and then like the sexual stuff went away again, like after I stopped it. And and then like it w okay I felt good. I felt good. Like after I stopped it, like I didn't have any ideations anymore. Like everything felt great, like I felt fine. I was like, man, it was like the medication this whole time, you know. So then like three months later, like I remember one night I just like woke up to the shock in my body that like woke me up out of sleep. And then that night I like didn't sleep at all. And I was like, like, this is so weird. Like I was like, what's going on? You know. So then the next night, like uh I I slept for like three hours, and then it was just the next night, it was just like like not getting any sleep. Or like some nights I wouldn't sleep where I would get like two to three hours. And this went on for like weeks and weeks and then months of just like barely any sleep. And and then I started getting panic attacks and like like restlessness and and uh I mean like at that three-month mark, it was like I remember for a while where I would like pace the floor back and forth in my in my multiple spit because I'd like I don't know, I just wanted like I didn't know what to do. I was so like anxious and like having panic that I like I just wanted to move and so I just like walk back and forth constantly. And uh like nobody knew how to help me. Like I would wake up um to these adrenaline, like like these cortisol, uh I don't know how to explain it, just like heart palpitations, like after sleeping in the morning, like when I'd wake up after three hours of sleep, I'd wake up in an instant panic attack. Like, like just like fighting for my life, like just insane. And I just felt like I was losing my mind, like I didn't know what to do. And I went to my parents and told them what was going on. I was like, I think I'm withdrawing from this medication. And like I went to my my mom and stepdad. Well, no, well, I did go to my mom and stepdad and told them about it, and they believed me, but I went to my stepmom and my dad, and my stepmom was like, There's no such thing as withdrawal from psychiatric, like from antidepressants, you know, there's no such thing. She was like, I'm on Prozac, and I I would have heard of this before, you know. She's like, I've never heard of this. And I was like, Yeah, like I think I'm withdrawing, like I can't sleep, I've never experienced this before, and like I don't know what's going on, you know. And so I I I like it was like months and months of this. And then eventually she was like, Well, my brother, and I didn't know this at the time, but she was like, Yeah, my brother, he uh is a psychiatrist, like a nurse psychiatrist, and like he'd be willing to see you and see if he can help you. So I was like, Okay. I was like, sure, like I'm willing to meet with him and just see if he has any idea on like what's going on, you know. So he was like, It's pretty obvious to me that you have a ton of anxiety. Like anxiety seems to be like the main issue here that's causing you not to sleep. And I was like, I kind of disagreed with him and I kind of voiced I voiced my opinion. And he was like, Well, it sounds like you've had a really hard time with all these medications, like it sounds like they like really affected you. And he's like, What there's like this new thing that's come out called gene site testing, where like they can test your like saliva and then it tells them what drugs you metabolize the best. And I was like, okay, like I that sounds great, so I don't have to be like a guinea pig, you know, trying all these different drugs. And so the test results came back a few weeks later, and I was in so much distress. I was like, I was willing to take anything that could help me sleep, you know. And like I was scared, I was really like terrified to try another drug. Like, but he was like, No, it'll be fine. Like, like it's a drug called deloxetine that's generic, but it it's called Cymbalta. He's like, Yeah, we'll start you, I think, on 30 milligrams, it's like the lowest dose. And he was like, We'll start you on that, and and then we'll just go from there, you know. And so I went to the pharmacy. I and I remember I waited in the lobby and I sat there and I I called my mom and I was like, I'm so scared to take this medication. I was like, like, I have a bad feeling like I shouldn't take this medication. Like I'm I'm terrified that it's gonna make things worse, you know. And um, I just sat in the parking lot and then I like drove home, and then that day, like my dad was like, like, you need to take it. He's like, like, you have to take it. He's like, did you take it? Like he kept asking me because he like knew I was freaking out and like wanted me to take the medication. I was like, no, I haven't taken it. Like I'm scared. It's like, no, like it'll be fine. And like my mom, like I called her and she was like, Your uncle would never like prescribe you something that would hurt you. That's what she told me. She was like, You would never prescribe me something that would hurt you. So I don't I don't blame anybody, but it's just just frustrating. Like they wanted me to help because they I would call my mom every day in just distress, like like extreme distress. Um, and nobody knew how to help me. And I would go to like doctors and um I could get into that more, but I I've gone to like instacares and like I forgot this part, but I'd gone to an instacare and they gave me another antidepressant as well. Um, but it was just trial, like this the same thing. And like I I just felt suicidal and got off it, and then they gave me an antipsychotic and I tried it, and then I I got off it just because they wanted me to sleep, you know, helped me sleep, but it just did nothing for me. And so that's why like I gave it a break for a while and just dealt with the insomnia and like panic attacks because I just felt like nobody could help me. And um, that's when I like my stepmom and everybody was like, like, your uncle, like your step uncle can help you, basically, you know. And so then when I got Cibolta, sorry, I just backtracked, but then when I got Cibolta and I took it, like that day, um, I just remember I felt like just disconnected, like disassociated, and I had like burning in my brain, and I don't know how to explain it. It just felt like like just like pain. It's so hard to describe. It's it just like felt like my head was on fire. Like I don't know how to explain it. It just was super painful in my brain. And I uh just disconnected all day and I just felt so weird and I just kept taking it, and it like actually caused me not to sleep for like I don't know, like it felt like a week almost. Like I just didn't sleep at all. Like I would just go down and like try to sleep, and I would lay in my bed and I would just stare at the ceiling. And I would call like um there's like these emergency like instacare, like telehealth doctors you could speak with. And I I did that several times, like for nights that I I just couldn't sleep, you know. I would tell them what was going on, and they were like, You you do know that this drug can cause insomnia, right? Like it can cause you not to sleep. And I was like, I was like, well, why am I taking it, you know? Like and she was like, Well, you gotta talk to your uncle. And I was like, okay, but he was like out of town at the time, so I had to like go weeks with you know dealing with these side effects and not sleeping, really.

SPEAKER_00 17:37

And so what when he prescribed that to you, was he clear about that at all? Like what the side effects might be and what you might experience?

SPEAKER_01 17:44

No, no, not at all. He wasn't. He he literally like it was pretty much the same thing that all these other doctors had told me, like my all my other patients tolerate it well. And like he even had me, because he knew I had like bad side effects on these other drugs, like had me write a list of like the side effects I was experiencing. And I think I lost the list, but it was like a pretty long list of like stuff I was experiencing on the drug. And I told I when I met with him, like telehealth, like met with him, um, I told him about the side effects, was like, this must just be from your lack of sleep. It was like, I've never had my patients like make these complaints before that you're like telling me. He's like, I've never had any of them say this stuff before. And I was like, okay, like I'm pretty sure it's the drug because even on no sleep, I wasn't experiencing this stuff, you know. And so I just took it for probably two months. I took some balta. I just took it every day, regardless of the side effects, just to see if it could help me. And like I was being encouraged by my family, like, just keep taking it. Like it could take week a couple of weeks for it to become affected, you know. But um, that first week I remember I had like I was laying in my bed, or like, I don't know, it's like that one of those days, like after like a week, I think, um, I just remember like my channels had become not to the touch. I was like, that's so weird, like what is going on? You know, like I never even I've been on like six other antidepressants or no five other antidepressants before Cymbalta. And I had never experienced sexual side effects that I was experiencing now on on Cymbalta. I was like, this is so weird. Like like I would orgasm and I couldn't feel anything, and then it was hard to get like an erection, and then just like the skin on my penis was mount. And I was like, this is so strange. I was like, I've never had this happen before. And I just thought it was, you know, a side effect of taking Symbolta. So it was like I've never tried this drum before, like I don't I didn't know the side effects, you know. But it just like just caught me off guard, you know. And so um I just kept taking it and I was like, oh, this is this is just a side effect, right? It'll just go away when I stop. I didn't know anything about like PSSD or anything like that. And then I eventually just like asked AI, I think, like my lift them up, like my side effects that I was experiencing like on the drug, and it was like, it may it may be PSSD, but like you have to be off the drug, you know what I mean? And so I called my uncle up and I was like, hey, like I'm experiencing like all these side effects still, like it's not getting any better. It's been two months, and he was like, Well, like you should probably should just stop taking it. And I was like, Do you want me to taper off it? Like, do you want me to just like like slowly taper? He's like, No, that's not necessary. Like, you can just stop taking it. I was like, Okay. So I just I stopped taking it and and then just the sexual side effects like last like stayed. Like they didn't go away. And I was like, This is so weird. Like it had been a couple weeks and I still had it gone away. And then I like kept looking it up and it was like PSSD, like, like, you know, post-SSRI sexual disruption. And I was like, like this can't be true. Like, I can't have this, you know. And then like a couple months go by, and then I bring it up to my my dad and stepmom. I I like confront them one night and I'm like, hey, like after I took Symbolta and I stopped it, like my genitals are numb. Like I can't feel dumb anymore. And I was like, I don't know what's going on. And they're like, Kale, like, do we need to put you in like a facility? Like, do we need to put you in a hospital? Um, it's obvious, like, you need help beyond what like people can like we can't help you, is basically what they were telling me. Like, there's nothing they could do to help me. And they were just like dismissive and like ignoring what I was saying. And so I was like, okay, like I'm just not even gonna talk about it anymore. Like, there's no point because they're not gonna listen to what I had to say. And so then I just like gave up on talking to them about it, and then months went by, and then it was probably When was it? I I stopped it in June. June, July, August. It was probably six months later, after I was still having these like weird sexual side effects. I looked up like the PSSD network, and then I joined a support group with other people experiencing the same condition. And then I just started meeting with them and telling them my side effects and like what I experienced, and like they were saying the exact same thing, you know. And then we just it just built from there, like building connections with other people, and then I found about met some people with the the PSSD network, and then I just started working with them and and just it went from there in And it's been I think this month or the end of this month or in the weekend of June, it'll be two years since I've had PSSD where like I can't um I can't feel anything anymore. Like my emotions are numb. Like it's like a constant state of like nothingness, like all the time. Um and it it's like being a ghost to your own existence is what I like to say. It's like like you you lose your emotions, like you lose your connections with people, like it just it doesn't and and like sometimes like I can like I'll look at my family and it's like I know I love them, but you can't feel it anymore, you know. And just like the sexual side effects and everything like that. It's just like, how is it how can this be possible for me to be off a drug for two years and for me to be still experiencing the same side effects, you know? Um, it's just nobody ever told me like there was no informant say on any of these drugs on like what side effects to experience, let alone like potentially permanent, you know, sexual like dysfunction and and sex like genital numbness, you know? Um it's just insane, you know? It's insane for me to be two years like off the drug and still be living like this.

SPEAKER_00 23:13

Yeah, so at what point kind of between like I guess right around after you kind of stopped and bought a cold turkey around that time, is that when you started looking into PSSD or acadesia? Like at what point did you start to do your own research and and figure out what you might be feeling, you know?

SPEAKER_01 23:30

Yeah, so like I looked up the symptoms and then what like that's when I found like the PSSD network website, and like other people saying, like, I don't feel any emotions anymore, like I don't feel anything, no love or connection, and then like the genital numbness and the sexual side effects and stuff. And I was like, that's exactly what I'm experiencing, you know. And then by going to the support group, and when I introduced myself and like my my story, I told them about like when I'd gone off so often, and I just like paced for like it for like days. Like I would just wake up and pace across my like our basement floor. I just like go back and forth, and they were to they were telling me I didn't know the word for it, but they were like, that sounds like I these are like you you were probably just like you know, like just the constant, like wanting to like move them, like just just insane, you know, like I just didn't realize at the time like what was going on, you know.

SPEAKER_00 24:23

It's just yeah, especially when when you were yeah, when you were talking about how you like you felt like your brain was on fire and all that stuff. It's like so but but and you don't feel any academic symptoms as of right now, right?

SPEAKER_01 24:35

You're pretty much no probably like a month or two like after Zola, like when I was in that distress of not sleeping and all that, I'm sure it's all like played into a part in in my, you know, so distressed like symptoms.

SPEAKER_00 24:50

But now I'm mostly just you know, the PSSD symptoms and just like emotionally flat, like feeling nothing, like because when you were experiencing, I guess looking back, what we could now say is probably acadesia at that time, you know, you said you might have been having some memory loss, but like you you'd watch like a movie or something, and you might kind of like forget certain things about it. And of course now you say you don't you don't have any of those effects, right? There's no there's nothing left from that.

SPEAKER_01 25:17

Um a little bit cognitively, but nowhere near like where I uh was on, like starting that new like a new antidepressant and on an antipsychotic where I can watch a whole movie and not remember what I watched, you know what I mean? Um I still have like cell memory issues with things, obviously, but nothing to like that extreme of like you know, days go by and I have no idea what's going on. Even I mean I had that in withdrawal for a long time, like I would have days and dates go by and I had no idea what was going on thing, but it's kind of leveled out a little bit in that regard. But you know, just it wasn't not as bad now, thankfully.

SPEAKER_00 25:53

So during that time, obviously, like I I I don't want to get too much into your your your personal stuff, you know, whatever you're willing to share, but obviously, like you you were in college and everything, and did you try to have relationships? Were you in relationships? Did you did you date at all? I mean, or even before when you started feeling a lot of like the kind of emotional disconnect, were you still interested in someone or like did you have those feelings at all, or or did you just kind of like I don't want to say give up or be were you you so preoccupied with like your feelings that you just didn't even think about that?

SPEAKER_01 26:24

Um so it kind of like different stages for things. Like I know like after Zoloft, I was so distressed, like the idea even trottled out like now. That wasn't even in my body to try to like be sexual with anybody. I think when I was on Simbalta, maybe after a while, like I just had no sex drive, and like when I stopped it, I think I did have some libido for a while, but it was just like like I just can't perform sexually, and it just felt you know embarrassing. So I was like, like I I did go on dates and I tried, but it's hard to connect with people if you don't feel anything, you know what I mean? Like of course, yeah. You could try to have like an in-depth conversation with somebody, but if you can't like read the signals or anything like what you're talking about, like it's hard to you know get to that point with anybody. So like I've gone on dates, like I've tried, you know, but it's just it's so dis dissatisfying and like embarrassing, like it just feels like a waste of time, like to even try, to be honest. Like, but I don't know, it it's just yeah, like maybe one day, like, you know, but right now it's just too much, you know, to try, to be honest.

SPEAKER_00 27:38

And um, and how about like your your buddies who were noticing that you were changing before? I mean, do you you you keep in contact with them and you tell them about everything that you're going through and that you're you're in the PSSD network and stuff, or no, not really.

SPEAKER_01 27:50

Like I I told one of my friends about it before. Like I I went into depth with them about it. And he didn't he kind of understood. He believed me, but it's just unless you're living it, it's hard to imagine what it's like, you know. Oh just it you can describe it to somebody, but they're never gonna fully understand. And that took me a while to realize it's like I would sit like I've told my parents like about it, and like, yeah, I've told like some friends, but it's like I could sit there and tell them all day about like what I live with, but it's like like they don't they're not gonna understand, like, you know, as much as I want them to. And that that took me a long time to realize. I was like, like, it just it's too I think it's just too hard, it's beyond some people's comprehension, you know.

SPEAKER_00 28:34

You know, if you can kind of go back and like look at that first meeting that you had with the doctor, you know, you were you were first prescribed LexaPro, what would you do differently, or what would you say to your 19-year-old self?

SPEAKER_01 28:47

Um I would tell them that not every you know emotion is something that is a bad thing. You know, like it's okay to have anxiety, it's okay to like not know where you're going in life. Like a drug doesn't affect anything. Like, just because a doctor says you should take something doesn't mean you necessarily should. Especially if they don't do any like vitamin tests or like see if you're physically active or take your hormone hormonal levels or anything like that. Like, I just you know, it's part of like becoming more m mature and realizing things, it's like that doctor just didn't do a very good job, or a lot of these doctors like just not tolering me any side effects or anything like that. And I just wish you know, if I would have had full informed consent about all these side effects, like I never would have touched it, you know.

SPEAKER_00 29:32

If there are any doctors or or caregivers watching this, I mean what would you want them to know?

SPEAKER_01 29:37

Um that like patients that come to you and exp like tell you about these symptoms, like the general numbness and like emotional numbing, like after stopping the drugs, like it's not still a psychiatric issue. Like something actually is going on, you know, and it's gonna take a lot of people to figure out like what's happening. You know, we're we're doing research and we're trying to figure out what's going on, but it's gonna take a lot of people and a lot of money to try to figure out like what's even happening. And then once we figure that out, you know, we know the drug caused it, like the drug ended up stopping, but we don't know like the actual mechanism of like what's causing these symptoms to persist. And then once we figure that out, then we can focus on trying to figure out a treatment. So until that happens, you know, and and doctors start like trying to help us figure it out, you know, it's gonna take some time. About say a year of or maybe like probably eight months of living with with PSSD, I looked up some docists that were like really well known, not not even about PSSD, but just like well known. And um there's one in New York that I reached out to, like their clinic, and I was like, Hey, has his doctor ever heard of PSSD? And they were like, Yes, like he's heard of it before. Um, he sees patients occasionally with these symptoms, and he'd be willing to meet with you. I was like, Okay, great, like that's awesome. And so it was like $500, but I was like willing to like meet with the urologist. Maybe he had like some suggestions of like what I should do, you know, beyond what I know, right? So I scheduled the appointment, met with him, and right away like he was like, I remember you he told me, What makes you so sure that you have this condition? He's like, you just seem like you're so confident that you have this condition. Like, what makes you so sure? And I was like, Well, after I started some voltage and then stopped it, like I had I told him all the sexual side effects and everything, and like the timeline. And he was like, you know, like this sounds like like you're having like high cholesterol. Like that's what's causing these sep dumps. And I was like, I just shook my head. I was like, it's like, no, this makes no sense. I've never heard of general numbness after stopping antidepressants and it being from like high cholesterol, you know, like that makes no sense at all. And then he was like, well, it might also be like some type of like STI, like some sexually transmitted like disease. And I was like, there's like a sexually transmitted disease that causes genital numbness, you know? I was like, I've never heard of this before. And so like I went to my primary care and I told him I was like, I want full sexual panel done. I like want my cholesterol tested, like I want all this stuff tested. All the results came back, my cholesterol's in the normal range, and my sexual hormone. Oh, well, they did sexual hormones as well, but my uh like SDIs, I had no SDIs or anything like that. Like it all came back negative, and and my hormones are in a normal range. And so I never went back and talked with him because I was like, he's honestly not gonna listen to me, you know. Yeah. And so I was just like extremely frustrated. But then I started researching, looking at like research papers of like PCD and and like seeing what urologists have like heard of it before. And I didn't want to pay like an arm and a leg, you know what I mean, with the what again. And so it was like a hundred dollars that I met with a urologist from the the Netherlands that like has seen patients before and like helped write the um diagnostic paper for the condition. And so I reached out to him, I met with him over the help and I told him like my timeline of like the drugs I tried, like what I experienced, or like what I was still experiencing, and he was like, This sounds exactly like a PSSD. He's like, I'm diagnosing with PSSD. Like he gave me a letter certifying like I met with Gail, like his hormones are in normal range. Like I sent him my my panel of like hormones and everything. He's like, His hormones are in a normal range, like there's no other explanation for his symptoms and his timeline besides you know PSSD. And so I was like, Finally, finally, somebody will listen, you know, but it's like there's not much beyond that really that he could do. Like he suggested like some vitamins and different stuff I could try, and I tried them, but they didn't really do very much, you know. Or like I met with another one, and basically just kind of the same thing. He didn't really diagnose me with it. He just kind of said you might have it here in here in the States, but he didn't really know what what to do besides just like prescribe me my agra, you know, like you just didn't know what else to do. So a lot of these doctors just like and us, we have no idea what's going on, and neither do they, you know, to try to figure out how to help people.

SPEAKER_00 34:13

I know before you said you were trying to exercise more, eat eat better, you know, stuff like that, just to kind of get your mind off of that. I mean, what other hobbies or or other things like that do you do now to kind of just you know uh spend your time doing something to to get your mind off of something depressing? I I I I don't know. Do you do you do you have any other hobbies or things that you're interested in?

SPEAKER_01 34:35

Or like gaming with friends, like I find that to be a good outlet, like just just gaming with people and uh just trying to find connection, you know, and and it is good to think about other stuff besides this all the time, you know. So um and just being outside, like I'll do bike rides or like like bike around and try to be active, go to the gym occasionally, and just like try to be and eat as healthy as I can, you know. But that's about it. Like just I don't know, socializing in a is always good with people and just try to get your money off of things, you know. That that tends to help, like just take the the relief, you know, where I can get it.

SPEAKER_00 35:13

But and thinking about like when it first started, like yeah, I know you were you know around 19 years old when you you had that panic attack, like that was like what 20 that was like a kind of like late COVID, or I guess like maybe the height, the height of COVID. Um how how did that kind of affect things, you know?

SPEAKER_01 35:29

It definitely made me more isolated, like during COVID and stuff. Like I was more alone, and then when you're more alone, you have more time to think about things, and it's like then it then just the spinning of thoughts and stuff, and like just like being alone for a lot of time kind of made me like super just like anxious. And I think that all like played into everything. And like I didn't really get high school graduation or anything like that, and so I never really got to say goodbye to people and and then just like the lack of connection and like I don't know, it was just really hard like to connect with people after that. Like things changed, or at least for a while, like things are better now, but just for a while there like during that time, it was really hard to like just find the connections I needed, you know, the support that I needed.

SPEAKER_00 36:09

And yeah, so and even though I know you said before that you know, you you might look at someone and and you know that you love them and you care about them, but it's like really hard for you to feel that connection. I mean that that being said, do you feel like you still feel like you have a pretty good emotional support group right now? You know, now that it's been there's been time and people kind of know more about the condition. I mean, yeah.

SPEAKER_01 36:30

Yes and no. Like um a lot of my family knows about it now. Like my siblings and like my my mom and stev dad know about it. My other side of the family doesn't, I don't talk to them about it because they wouldn't really care. But um, the other half of my family, like I talked to them about it, and they care, but it's just like I don't know. It it's just where they don't understand it all the way, it's hard to help somebody with it, you know. So I could call them and tell them like what's going on, but it's like even if they were there with me 24-7 and like trying to support me, it's like I'd still feel the same way. It's just like just I don't know. It is nice to have somebody there and to vent, you know, but it's just you know, it's hard.

SPEAKER_00 37:09

I I I I can imagine. I mean, and you know, if if there are people watching right now who have PSSD or or who might be experiencing things, you know, that are very similar to PSSD, you know, what would you want them to know?

SPEAKER_01 37:21

Um that there's a lot of people out there that are experiencing the ex the exact same thing, you know, and that you can find support in connection, you know, with a lot of people and that they're not alone. Like there's a lot of us out there that it's good to talk about it and talk to each other about it. So that's why I recommend like support groups and like meeting with people and just trying to spread awareness so that nobody else, you know, has to go through like what we're going through right now, you know.

SPEAKER_00 37:46

What's like the most valuable piece of information maybe about PSSD that you found out there that that really help you kind of understand the condition or or or understand more about it that you'd want to share with someone else?

SPEAKER_01 37:58

Um that's a good question. Like something I found out about it that I like want other people to know. Is that what you're saying? Yeah. Yeah. That like it's real, you know, like this is a real thing and it's happening to people. And even though it may be rare, you know, like it it is possible, you know. And it and you don't like I don't know the center, we could talk, but a lot of doctors like say it's rare. Like they've done like one study out of out of like Israel, like saying that like it's like one in like 216 people or something can get it. Like it's just extremely rare, you know, but you don't know. Like there hasn't been any large like studies done to figure out how rare it is. But based on how many people like like bring it up online and stuff, like it could be like tens or hundreds of thousands of people experiencing it, but they don't know about it, you know. So I just I guess you go one day from like and it's hard, like it's like you grieve. I remember I told my mom this, it's like you grieve who you used to be. Like I grieve who I used to be. Like I am not the same person I used to know. Like I'm a different person. Like obviously we change over time, but like if you lose your emotions, you lose your connection with people, like you lose your sexuality, it's like you become like a husk. Like you just don't don't connect with people the same way, you know. Um so it can be really hard. Like it and that's why you know it it's just best to to connect with people and try to figure out what's going on together. But it can be really frustrating.

SPEAKER_00 39:28

So is there anything else you'd want to share with us about uh PSSD or about maybe how you're feeling, maybe your your outlook on the future, you know, um anything else?

SPEAKER_01 39:38

Um I mean it's hard. Like I just I don't know what the future has for a lot of us. Like I hope it's good, you know. I hope they're able to figure out what's going on to find a treatment. But it's just the unknown, you know. Like until we figure out what's going on, we don't know if there's gonna be a treatment or not. Like if there's like if the damage or if the nervous system, you know, the changes that have been done, if they could be reversed, you know, we don't know. Like obviously, of course you want to hope for the best. And I I I really hope that they're gonna figure it out, but it's just it's gonna take some time, you know, and just more funding to try to figure out what's going on, you know. There we have research going on in like Italy and Canada and and other places around the world, like starting, but it's just takes time to try to figure those out, you know, with researchers and stuff. But one day I hope we'll we'll figure out what's going on for sure.

SPEAKER_00 40:36

So what's your kind of day-to-day look like right now? I mean, are you are you you working anywhere or do you, you know, or are you planning for anything else in the future? You still in school, or you finish school, or um, I work. I work right now.

SPEAKER_01 40:49

Um I'm still in school, like um, but I just I just if I need to take a step back like I do, or like I I have some accommodations through my university to help me um as needed. They don't know exactly what's going on, but I've kind of like just talked with like counselors and people about like what I'm experiencing, and even though they might not fully understand, like I have some support there, but I am working just part part-time, like as I can. And I don't know. I I think it's good to like for me personally to just get my mind off of stuff, you know, and just be a society, you know, instead of just reminiscing or like just thinking about stuff all the time.

SPEAKER_00 41:26

But yeah, that helps all right. Well, thank you so much for for sharing your story today, you know. Uh it's it's yeah, it's it's really something. So um, I appreciate it. 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.