I Took Lexapro for 15 Years Without a Problem. Six Days Changed My Life Forever

[00:00:00]A week and a half later, it was like a light switch. I noticed my symptoms immediately and knew something was terribly wrong because my sexual functioning went from 100% to Z literally zero. Uh it's not like, you know, oh, my erections are a little bit weaker. Oh, you know, I'm feeling a little bit numbness. It was from functioning completely normal to absolutely complete complete um sexual dysfunction. And you know, I just I think it's important to say that for those of us who experience this and sort of for severe cases, it feels much more using the word sexual dysfunction is not uh does not do justice to the severity of what we're experiencing. It's much more like a chemical castration.

[00:00:46][music] Uh can you tell me uh Stephen uh about your life before taking Lexapro?

[00:01:02]>> Yeah, so you know um my life before taking Lexa Pro, I was about as active uh person as you could be. I I grew up playing a lot of sports. Um extremely extremely extroverted, extremely empathetic. uh loved just you know talking with people and doing activities and was very had an extremely outgoing personality like I would say yes to a lot of things almost everything it's like I would say yes to so many things you know there was a point in my life where I was almost like okay like I have I don't have I don't have to say yes to everything you know um and really just was a happy guy you know smiling laughing um just loved uh really had a great life, you know. Um, like I said, very very active, a lot of a lot of friends, social, you know, liked movies, like sports, uh, liked exploring, traveling, and, uh, yeah, was really a pretty happy, great life. Um, you know, was never depressed or anything like that. Um, you know, I took the medication for some general anxiety and, uh, really had a wonderful life, you know, prior. Yeah.

[00:02:16]Yeah, sounds pretty similar um to a lot of the other PSSD sufferers that that we both know of. Um sounds like you had a great life before before this had happened. Um can you please tell me briefly when you decided to take the drug also?

[00:02:33]Yeah. So, you know, my case is sort of um I would say interesting like you know I found through you know being in the community and talking to other sufferers it's not completely uncommon but [snorts] you know my uh in my case I actually took the medication for many many years without a problem and uh came off the medication and then a a brief exposure of just one week, you know, completely destroyed everything. Um, and I I took the medication as an undergraduate in college. Uh, had some general a little bit of general anxiety. I was very highly functional, was doing well in my classes, um, but just, you know, was feeling a little bit anxious about sort of, uh, you know, personal life and, uh, school a little bit. Um, and, uh, yeah.

[00:03:29]So at the time I uh ended up seeing a therapist and the therapist uh told me oh there's like a relatively newer medication uh you know it's uh it's not addictive like other medications for anxiety say I guess like what benzo are considered at the time and you know it's tolerated very well by my patients and I think it will help you. Um you know I think at the time I told her okay let me think about it. I came back a week later and uh you know said I said okay I I'll give it a try you know and uh I I believe that uh you know I may have experienced some benefits uh from it in initially um but you know she had told me like you know you have to take it every day you can't miss doses and basically like the general thing is when you start these medications you can't stop them so you know I just went about my life uh and uh just would take it every day and uh and and went about my life and things were okay. You know, many many years later, like 15 years later, I I felt a bit anxious again. And I'm like, "This isn't working. This this isn't helping me anymore. I don't know if it's because it's been so long or whatever. I went back into therapy and the therapist, the new therapist was like, "Okay, the medication isn't helping you, so you come off." And I proceeded to taper off the medication over a few months.

[00:04:55]uh and was doing great, better than ever for like seven seven months and then at the seven month mark again little it's completely you know uh life circumstances type stuff came up a little bit uh anxious about housing a little bit anxious about work uh and that week I had actually met with another the other therapist who was at the practice not my usual therapist and this therapist pushed me to go back on a low dose of Lexapro which I took for a week. Uh by the third day, the second time around, I had horrible night sweats and insomnia and I immediately had uh you know buyer's remorse or regret that I had you know reinstated the medication. So I proceeded to stop the medication after 6 days thinking to myself this is a very short exposure. It's a low dose. If I if I stop now everything will go back to normal. And like I said, you know, a week and a half after that, you know, full-blown, you know, PSSD symptoms, like my sexual functioning went from 100% to zero. Uh, literally, uh, my genitals went completely numb. And, you know, I'm like, I noticed like, wait, I don't feel sexual attraction anymore. I don't have any response to pornography. I don't feel then I'm like I don't feel any feelings of uh for my family members and this severe severe horrific derealization um kicked in and uh you know at the time I had you know the time I didn't know it but you know basically as things stand now just like a complete destruction of my life you know.

[00:06:38]>> Yeah I'm very sorry to hear that. Um I know when we spoke on the phone uh you have you have a very interesting story.

[00:06:44]I know when we spoke we talked about how other people um and how it wasn't their first drug they took that caused the PSSD and it may have been the second or third or who who knows. Um but yeah, you have a very interesting story on how it it happened but but you still did take the same drug but it was after you had stopped and restarted it. That's when it happened.

[00:07:11]It's just a very >> Yeah. And you know, I think that like to follow up on what you just said, it's like, you know, it just goes to show you how dangerous these medications really are. It's like the same medication I took at a higher dose for 15 years. I take it again for a week and it's a total destruction. And it's like, you know, how would somebody who, you know, like if somebody takes the medication and they experience side effects, uh, you know, like that would, you know, potentially be a caveat or a warning to them that, you know, if they reexpose themselves to the medication, you know, that that could happen again. But in my case, like I over all those years, I had no negative side effects um at all really. like I would experience a little bit of sweating at night and uh and night sweats and I would experience a little bit of dry mouth, but you know, my sexual functioning was great for all those years. Um and uh and you know, like how could you, you know, at the time I was very hesitant to reinstate the medication because you work hard to come off these medications uh if you've been on them and uh and you know, make lifestyle changes. is I completely made a ton of lifestyle changes and and uh and routine changes. And to be honest, those things had helped me more than the medication ever did. So, I was very reluctant to, you know, go back on. But I thought to myself, okay, worst case, you know, uh I'll just stop taking it, no problem. And and uh and that'll be it. So, like, you know, I could have never possibly imagined in a million years that something like this was possible. And of course, I didn't know.

[00:08:51]I didn't have the slightest clue that PSSD even existed. Um, so, you know, uh, yeah, I just think that it the fact that a reexposure can trigger this goes to show you how dangerous these medications uh, really are. And that like, you know, there are people who out there who might think to themselves, oh, well, you know, I took this medication before and I didn't have any problems that it's safe for them to take it again. And I, you know, I think it's important to say that that's not necessarily the case at all.

[00:09:24]And if it was that simple, that some people were just predisposition to this and others weren't, then cases like mine uh wouldn't exist. But it's actually like we said ve relatively, you know, relatively common that people, you know, take one medication, they're fine, and then they take another one and then they get, you know, you know, PSSD and uh or and it's and also even the same medication. I mean it's a little bit more rare but you know there are people who have told me the same thing and it's just it's just you know it's just unimaginable uh to say the least you know and I just think it's important to say that like although I'm sitting here and might seem like I'm in decent shape like I'm completely shell shocked every day and every moment that something like this is humanly possible you know so I just wanted to say that too.

[00:10:16]>> Yeah. No, very well said. It's truly unbelievable. Um, and it's just who knows what happens when you increase and decrease certain chemicals in the brain and we don't we don't know exactly what what's going on. So, um, yeah, you're absolutely right. Um, what type of safety information was given to you?

[00:10:39]>> So, the safety information that was given to me was basically like this is a relative. This was back in 2008. So, you know, I'm just, you know, eight I'm getting a little older now. Um, but you know, at the time, uh, you know, Lexapro is relatively newer on the market and I was told by the therapist, you know, this is a relatively newer market and it's not addictive. And I think that compared to like other anxiety medicines like the Ben benzo profile, um, they they say that these medications are they, you know, many people like to claim that these medications are non-addictive. And so first to say something about that I mean it might not be addictive in the sense that other things are addictive let's say uh benzo or other drugs or alcohol but you know they'll tell you it's not addictive but then they'll tell you but you can't stop taking the medication you have to take it every day. So it's like you know and as we know people who come off the medication you know can experience severe severe severe withdrawal and you know there are cases of PSSD where uh you know it's essentially a uh a you know a withdrawal uh we as we know there are people who start experiencing their symptoms when they are ceasing the medication. So, you know, this concept that these medications aren't addictive, it's just not really true. They're just a sort of, you know, if you can't stop something, isn't that kind of the definition of addictive? Um although you might not experience that addiction like you might a benzo or say, you know, an alcohol addiction or something like that, a weed addiction. Um, you know, it's uh I think it's very misleading to say that these drugs aren't addictive. But yeah, so I was told um you know these drugs it's a relatively newer drug. It's uh well tolerated by patients. It's non-addictive and uh you know I don't even think I was really told anything about the sexual side effects at the time. It may have been mentioned to me.

[00:12:48]Um but uh I I can't even like say that I definitively remember that. Like I remember the other things vividly that that those were said to me, but um I basically wasn't warned uh at all about this uh the first time I took it nor the second exposure of course um at all. So no warning of the risks whatsoever. Um yeah.

[00:13:17]>> Yeah, that sounds very similar to to other people who suffer with this condition. And there was no warning, of course, cuz most of us wouldn't be in this situation um if we were given full informed consent. Um and a lot of people aren't even warned about the basics basic side effects while on the drug, never mind ones that can persist.

[00:13:40]So, I know there's never never any informed consent for most people.

[00:13:45]>> Yeah. And like I mean that's something that fundamentally has to change. It's just it's fundamentally something. It's just terrible. Um and you know like you know uh when I talk to people uh I ask them I say you know would you have ever taken this medication if you knew there was this risk and the you know the vast majority of people I'd say like 99% are like absolutely not. I will never I would have never in a million years touched this medication.

[00:14:22]And you know, another thing I ask people when I talk to them is I ask them, I'm like, "Do you believe you were mentally ill at the time in which you took this medication?" And you'd be surprised at how many people say, "No, I do not think I was mentally ill. I believe that I was experiencing a relatively normal reaction to life circumstances. They went through a breakup. They may be having trouble at work. They might be having trouble with their housing. all they might be worried about their finances, you know, all rel, you know, they might have just had a a newborn baby and they're uh dealing with stress from, you know, new being a new parent.

[00:15:00]Um so you know um yeah in terms of in terms of you know these warnings and us discussing sort of this concept of informed consent uh you know do I believe that there are some people out there who who uh who might consider taking the medication because their situation is so severe that they they might make that decision. Yes, I believe that there are there is a portion of people who might exist out there or do exist out there that would, but I you know I can say for myself I categorically was not one of those people. I would never in a million years have taken it and I'd say that the very the high vast majority of people are in the same boat boat and um and uh yeah so you know uh not in a million years would I have you know touch touched the medication in at all if if uh if I knew that even there was a small a tiny risk that you can have these symptoms and they could persist and be last for years months or you know what's been in my case approaching 3 years and to be honest with you, I feel as you know like uh in my case I feel that it's going to be indefinite. Like I think I'm stuck like this and it's it's it's it's horrifying. You know this it's absolutely horrifying.

[00:16:20]>> Yeah, you're absolutely right. It is horrifying. Um and that's why we have to push so hard for awareness and research every day. That's the only thing we can do. So could you please tell us your experience while taking the drug? Um, and how long did you take it and when did you first notice that something wasn't right?

[00:16:38]>> So, yeah. So, um, I took the drug for 15 years without any problems and then after around the 15-year mark, I perceived I felt a bit anxious uh in in around that time and uh I I perceived that the medication wasn't helping me.

[00:16:58]Um, so I went back to therapy because for those 15 years, I really wasn't in therapy. I actually was just uh uh after the initial, you know, period where the therapist had given me the medication, the the the my GP would fill it. So I was like, "All right, I should go back to therapy. I'm taking this medication.

[00:17:15]It's not supervised." And I thought actually I was doing the right thing, you know, going back and and and working with a, you know, a mental health professional considering that I was taking this medication. [snorts] Anyways, so you know, I I went back to therapy after 15 years on the medication and uh because it wasn't really helping me anymore, I proceeded to taper off the medication. And I can say that I had no standard withdrawal symptoms at that time. I was actually feeling better than ever. I was off the medication for 7 months and I really felt the best I ever felt. Um at the end of that seven months for not even like two weeks my anxiety was kind of elevated again due to life circumstances and the like uh that particular week I happened to meet with the other therapist at the practice. There was two of them at the practice that I uh had enrolled in and he pushed me pretty hard to go back on a low dose. Um you know he's like look you still have some anxiety you're having anxiety you should go back on a low dose. And you know, at the time, I really wasn't thinking too much about the fact that like, well, I came off this medication because it wasn't helping me anymore. Uh, I've been doing much better without the medication. You kind of put your trust in, you know, the medical system and the mental health care providers. And I was never a person who doubted a doctor. I was always just one who was I was a very good patient. I just took their word and just did what they told me pretty much.

[00:18:45]Um and you um I I uh I proceeded to uh take the medication again at a much lower dose relative to what I was on for that period of 15 years. And by the third day, I was having severe insomnia and night sweats. And I was like, I don't want to do this. I don't want to go back on. And uh by the sixth day, I decided to stop the medication thinking this has been a very brief exposure.

[00:19:13]It's a very low dose. if I stop now, my body will just go back to its, you know, pre-reexposure state. And unfortunately, those symptoms continued. The severe night sweat, severe insomnia, and uh a week and a half later, it was like a light switch. I noticed my symptoms immediately and knew something was terribly wrong because my sexual functioning went from 100% to z literally zero. Uh it's not like, you know, oh, my erections are a little bit weaker. Oh, you know, I'm feeling a little bit numbness. It was from functioning completely normal to absolutely complete complete um sexual dysfunction. And you know, I just I think it's important to say that for those of us who experience this and sort of for severe cases, it feels much more using the word sexual dysfunction is not uh does not do justice to the severity of what we're experiencing. It's much more like a chemical castration. It's much more like uh you know being turned asexual uh and uh it's much more like your genitals have been cut off than it is something that could be classified as sexual dysfunction. I just think I I just wanted to make that very clear. Um it's sexual dysfunction is not uh accurate way to describe what I've been experiencing for two and a half almost three years. I'd say that castration is much much more accurately a description of of what what happened.

[00:20:44]>> Yeah. No, that's very well said and um very well detailed because like you said, it doesn't do it justice at all.

[00:20:52]That's not it's not a normal sexual dysfunction in any any capacity.

[00:20:57]>> Yeah. Yeah. And like you know I think it's important to say that you know for many sufferers like traditional tools used for sexual dysfunction don't even work like um so one you biologically won't respond to the Viagra and seialis very well. Those mechanisms are sort of um re are they're reliant on sort of um sexual desire and in many sufferers cases they can't really feel that sexual desire anymore. So the tri the Viagra and the seialis won't trigger an erection effectively in a man. Um and uh and the other thing I think is important to say is that even if you have an erection, if your genitals are completely numb and you have completely pleasureless ejaculation or orgasm, really there's no point in having an erection, right? If you can't emotionally connect to your partner, right? And when you're, you know, sexually, uh, if you can't physically feel your your penis or your genitals and you physically feel no pleasure from a climax or orgasm, it's like, is there really a point to having an erection anyways? Um, so, you know, uh, sexual dysfunction, like we said, I think is really, uh, you know, um, maybe in much more mild cases that might be an accurate way to describe it. Um, but I think for many many sufferers, it's really uh it's not it's it's not an accurate description of what happens during PSSD. And to somebody who doesn't experiencing it, who's who's sorry, who's not experiencing it, you know, saying sexual dysfunction might sound like it's not that big of a deal, but this is so far worse than that. And like I said, it's much more like a castration.

[00:22:43]>> Yeah, very well said. Um, so when you stopped taking Lexapro, I know I know the first time you had stopped taking, you said you were on it for 15 years and you said that they weaned you off and tapered you off in 3 months. Is that correct?

[00:23:02]>> Actually, shorter. And the thing is is now knowing what I know, the taper schedule was way too fast. I think that she had me lower the dose uh every two weeks. So, uh uh so yeah. So, I think it was like uh I'm just thinking. Sorry, one sec.

[00:23:26]>> No, take your time.

[00:23:29]>> So, I think it was like five or six weeks. Yeah.

[00:23:31]>> Wow.

[00:23:32]>> Five or six weeks. And uh you know again like I guess I was extremely fortunate at the time that I didn't experience any withdrawal. Um uh you know I uh I didn't experience any withdrawal at the time but knowing what I know now like that that that was way too fast for somebody who's taking the medication for 15 years. And you know again as we as we discuss you know we we can't say as sufferers that you know uh tapering would prevent PSSD. We can't say that definitively. And obviously in my case, you know, I didn't experience those symptoms the first time around, but we certainly now know that the overall safety profile of a sort of hyperbolic taper as Mark Harowitz talks about and stuff like that is becoming a much more um spoken about and normalized thing. So like you know there are people who would probably say if you've been taking the medication for 15 years you might a a a safer tap taper schedule might be a year long you know what I mean and in my case it was 6 weeks and uh yeah and I knew nothing about the risks at the time I was obviously okay but in retrospect I look back at it and I'm like yeah this you know the therapist uh took me off way too quickly even though I didn't have any problems.

[00:25:03]>> Yeah, it's very scary. It seems like the medical system still has such little information and knowledge on these drugs still, which is very, very scary since how long they've been on the market for.

[00:25:15]Um, have you visited a clinician um about PSSD and if so, what happened?

[00:25:22]Yeah. So, you know, of course, immediately when this occurred, you know, I think that it's important to to to say that like, you know, to go from 100% normal sexual dis sort of sexual functioning to zero, it's extremely distressing. Uh uh and I was also you know starting my relationship at the time just one month into a brand new relationship with a wonderful with a wonderful person. Uh so I immediately emailed the existing practitioner I had and uh basically they told me you know don't be too worried about it. worst case we'll just give you some Viagra and Seialis and uh and it started like that of course just going back to the person who had you know prescribed me the medication and like I I do think it's important to say that it's like basically I experienced my symptoms but at the time I didn't even know PSSD existed so when my sexual functioning just suddenly disappeared I knew it was bad but then when you actually learn that this condition exists. It's like literally the most gut-wrenching oh oh my god moment that you could possibly humanly experience. Like this could be forever. Oh my god. And then it's like any distress you're feeling about your life circumstances prior to it happening is nothing. It's a drop in the bucket compared to when these when this hits.

[00:26:58]Um so anyways, sorry for the long-winded answer, but yes, I went to many medical professionals. Um, I went to the urologist right away. The urologist told me it's performance anxiety. Uh, and which I knew wasn't true because one, I never experienced any performance anxiety sexually in my entire life. And two, I could just be very candid and say my sexual functioning had worked perfectly with my partner a week before and it disappeared during, you know, se sexual activity alone, masturbation, right? So, it's like what performance anxiety would you have masturbating by yourself? It makes no sense. If you would have performance anxiety, you would have performance anxiety having sex with your partner. So, which a week prior was perfectly great, you know what I mean? So, he dismissed it kind of as performance anxiety. Told me to up the dose of the Seialis. Uh, I proceeded to up the dose of the Seialis. And a week later, the double dose of Seialis was working h less than half as well as the lower dose was the week before. So, my symptoms are getting worse. my re response is getting worse. Um uh you know they're deteriorating. Um went to the endocrinologist because my testosterone suddenly had tanked. Uh you know never had any signs of low testosterone prior to this. Was extremely fit. Would work out literally every single day. Never take a day off.

[00:28:21]Um I was in the best shape of my life.

[00:28:24]You know I'd put on a bunch of muscle at the time and uh my testosterone suddenly on the very low range. So then I go to the endocrinologist. The endocrinologist is like, "Yeah, I don't think it's the medication. You were exposed to it for just 6 days. It takes longer for 6 days for the medication to impact you." And and also I can tell you that because the this doctor is a family friend actually.

[00:28:50]um she privately disclosed to my parents that her her own teenage son takes the medication and she would never give him something that could h you know could be dangerous you know what I mean um so you know initially very dismissive um in terms of the low testosterone they gave me a medication called Clomid which numerically did raise my testosterone levels but nonetheless my symptoms continued contined to get worse and worse. Um and uh as as uh as I took the Clomid um so what happens then you know your family members and the people around you are like oh you're very distressed you should go see a therapist you know go talk to the therapist and I'm I'm like no you don't understand this is not a psychological issue this is a biological thing that happened to me like this is a response from the drug and like of course I'm distressed about this happening to me and they you know they're like push you to go back to the to the therapist.

[00:29:55]So you I went back to the therapist and you know me you know uh what's happening and part of the issue here is that the patients are sufferers are educating the medical professionals. It's not the other way around and it absolutely should be. A patient shouldn't have to come in and educate a medical professional about a side effect or a potentially permanent side effect from a medication. And what's happening with us PSSD sufferers is a lot of the times we'll go to the doctor and they don't even know PSSD exists. So one, they don't know it exists. Best case scenario, they'll, you know, acknowledge your experience or give you a chance to believe to believe you and maybe look into it, right? Uh and worst case scenario is they'll tell you you're making it up. It's impossible, you know? and uh and I've had uh varying responses uh throughout uh my times you know over this two and a half years but you know basically in the beginning you know people are like yeah this isn't the medication and when it happens to you and it's such a drastic change like it was in my case I cate I categorically knew the minute it happened that it 100% was the medication because I only changed one thing in my life you know I didn't change anything else in my life that could possibly account for this change, these changes occurring, you know? So, it's like I knew immediately it was the drug and then you walk into the to the appointment and you report it and they're telling you no, it's not. It's impossible that this happened to you taking it again for 6 days. And I'm just like, you know, it's very uh it's very uh discouraging. it uh it uh you know you're you're obviously very concerned and you're hoping that when you go to these appointments that you might be able to get some help and to be dismissed like that it's it's soul crushing you know um and uh you know many of the mental health care professionals that I went to I I went you know you know I went even though I knew believed that they couldn't help me with this I went you know sort of to appease my family and you know to show that I'm making an effort because if you don't say you don't want to go to the therapist or whatever, you know, the view sometimes can be, oh, you don't want to get better, you know, like you're you're not trying to get better and you have to go see these people because they might be able to help you.

[00:32:23]And I'm like, how can they even help me if they don't even acknowledge that this exists? How can they help me if they don't even validate my experience, you know? Um and yeah, so absolutely um I that that happened and uh you know uh basically best case scenario you're you know you're they maybe believe you and uh and um yeah so my experience I did seek medical help and uh you know in the beginning they were like totally disbelieving me and as I saw some other other medical professionals some of them kind of believe me like um I went to one doctor here a sexual health doctor in New York that's uh he's kind of considered a doctor who acknowled at least acknowledges the condition and uh you know I saw him and he in his presentation he basically says that SSRIs are a possible cause he doesn't really go in and say yes you definitively have PSSD or anything like that. But, you know, I went and saw him and then I went back a couple weeks later and I'm like, "My symptoms are getting worse. My response to the medication, the Viagra in Seattle, it's getting worse. My general numbness is getting worse." And he was basically like, "Oh, it's not possible that it's getting worse." So, even ones that, you know, allegedly acknowledged the condition, like he didn't believe me that I was getting worse and I absolutely was. Um so yeah I think that you know unfortunately best case scenario these doctors you know even if they and the thing is is even if they do believe you unfortunately now there's only so much they can really do. You know what I mean? So, it's like if you go to a psychiatrist, you know, they're going to just all they can really do is try to prescribe you more medication other than try to work with you on, you know, uh nonfarmacological um uh ways, but you know, in my case, it's very much like uh this was a response to the medication. And the other thing I will say, I don't know if that exactly makes expresses what I'm trying to say, but um the one thing I will say is that what also happened when I went back to the therapists, I went to many after this mostly because my family really wanted me to. And what I can say is that a cascade of prescribing uh tries to happens. So they basically don't necessarily believe you. They attribute it to depression. And I'm like, "No, you don't understand." man, like I was never ever depressed. I just had some anxiety. And they're like, "Well, you're depressed now." And I'm like, "No, what I'm experiencing is totally different from what I, you know, what a depression feels like." I'm saying like, "I don't feel anything. I feel nothing at all." You know, not not like depreme extreme cases of depression, you can feel nothing. So, it's like basically like they try to tell you you're depressed. They try to tell you that like, you know, you have like psychotic features. They try to tell you this and what they try to do is try to prescribe you a slew of other psychiatric medications. So just to tell you like off the top of my head since this happened to me they've tried to tell me to take olanzipene metrazipene trazadone wellbutrin uh clomipramine gabapentin um I'm forgetting oh uh how doll ailifi um the you know this is just off the top of my head and I'm you know I'm pretty sure if I went into my pharmacy records I There was there's even more. And oh, depeote. They tried to tell me. It's like you go in, you report that you've been harmed by the drug and what do they do? They just try to throw you on any possible drug that they can find, you know. Um, and they've they told me to do ECT. They try I tried they had me try ECT. They had me try TMS. They had me try ketamine. All of which none have had a any impact on on my symptoms whatsoever. You know, no nothing has had any impact. And of course, like, you know, I don't I extremely reluctant to try any medications. But, you know, in some of the cases, I actually did try them just because, you know, like I said, you have this pressure from your family members to to that don't really understand what's going on. they think that these med you know medical professionals are trying to help you and uh basically I don't think it's super uncommon that you know that basically like this cascade of overprescribing can happen es you know in in general to people who are dealing with mental you know like anxiety or depression or things like that but also particularly as a response to PSSD and it's just wild to me it's like why should I take a medication when you don't even believe me. Why should I take a medication that has the same side effect risk profile as exactly what I'm experiencing? It's like, and this is what they're this is what you're going to get help from people. This is what's happening. You know what I mean?

[00:37:43]>> Yeah, that's all very well said. Um, and you said that you last took Lexa Pro in 2023, correct?

[00:37:53]>> Yes, I can tell you the exact day. I remember the exact day. It was like October 6th, 2023.

[00:38:03]>> Yeah, that's that's unbel or sorry, a little bit a little bit earlier than that. It was the end of September because it was like a week and a half before my symptoms kicked in. I know the exact day that the full-blown PSSD hit.

[00:38:13]That was October 12th. So, I'd say about a week prior to that. So, yeah, October.

[00:38:17]Octo uh end of September, beginning October 2023.

[00:38:22]Yeah. When this all happens, it's so concerning and distressing that you remember the exact day it happened. You can remember it vividly. It's it's unbelievable.

[00:38:30]>> Yeah. And the thing is it's like, you know, I had no idea at the time. And uh but it's just like okay, like you're that's it. Like you know, like you're like it's like basically it's kind of like all right, you're you're that's like the day your life was over. You know what I mean? And and like in my case, you know, like uh I can talk to you more about the symptoms that I have if you want, but like basically like I actually in one of them is that I actually although I can remember things literally I don't form since PSSD I haven't formed any memories like I can remember where I went but I don't have it as like a memor like all my memories I can remember things vividly ex and the experiences I had in life prior to this happening. And it's basically like since this happened to me, I've developed no new memories in my life whatsoever. It's like all my memories of life are from prior to this happening to me. And I can tell you things that I've done, but they haven't formed as memories in my in my brain. You know, it's a very strange thing to describe, but it is the truth is that like I can tell you my cognition has gotten worse. So it is harder for me to remember things. But I can tell you you know if I think about it maybe what I did yesterday the days before it's very hard for me to to to remember but in terms of like the experience of having a memory that's also completely gone since this happened to me. So all my memories of life are from prior to this and it's like I've even though I've done some things I haven't uh I have no memory of do no memories from doing them u since this happened.

[00:40:13]>> Yeah. No, I can completely relate to everything you just said. Um, can you please describe and and list out all the symptoms that you currently suffer with?

[00:40:24]>> Yes. Um, and I'm going to try my best not to miss any because it's so many and it's just so unbelievable that that I'm going to try my best to to to um to go through all of them. But so first is complete sexual dysfunction, complete genital numbness, um uh complete pleasurless uh ejaculation, loss of ejaculative force, loss of uh uh ejacul uh sperm semen volume, um uh literally genital shrinkage. um probably in the realm of like 50% uh you know so it's like uh you know like I have wrinkles and stretch marks on my privates now that I never had um and uh you know then in terms of other physical symptoms you know digestive um uh problems um my I have you know it looks like I have a decent amount of hair but I my hair started rapidly falling out and like I have severe dam dandruff now.

[00:41:30]Like if I rub my beard or my head, it's kind of like it's snowing. Um or if I wear a black t-shirt, it's just like all over the place. Um I get skin rashes uh very very easily. Um uh you know, if I like sometimes if I just even take a shower or like shave a little bit, like I have these these rashes that just appear. Um, I have muscle spasms that occur uh intermittently um in places that I didn't even know I had muscles.

[00:42:01]Um, and uh that's kind oh like bleeding gums and uh gum decay uh you know in you know situations that that shouldn't really happen even just from like basic brushing my teeth. um uh yeah so that there's that and then um sort of uh sort of nonphysical symptoms I would say is as I mentioned this uh complete insomnia that kicked in after the first 3 days is never went away so I don't feel any feelings of uh sleep I I I don't sleep uh very well but I also don't experience any feeling of sleep literally literally like uh if I do sleep, it just feels like a continuation of the day before. It doesn't feel like I've gotten any rest. Um it uh I don't feel tired. That feeling of feeling tired. I don't feel that feeling of feeling refreshed after I've slept. It just feels like complete nothingness. Um you know, sexuality is much more akin to what I would describe as, you know, asexuality. um you know like obviously I know that I I I I am not and I know that I I you know am heterosexual but it's relatively you know I would describe it as relatively like uh a feeling of like you know becoming asexual um uh you know uh no feeling of hunger no feeling of thirst no feeling of say so I can go very long periods periods of time without eating and then I can uh then when I do eat because I my body doesn't give me the cue that I'm full. I can eat a lot. Um there's obviously no joy or pleasure. While I can still taste things, there's no joy or pleasure from food. I I don't uh I don't uh crave any types of foods anymore or feel any sort of pleasure from eating them. Um you know, complete anhidonia. complete complete anhidonia. I can't enjoy music.

[00:44:13]I can enjoy a movie. Uh you know, I used to obviously love exercising and sports, feel absolutely no no joy from doing that. Used to love to go to museums, feel no joy from that. Um complete anhidonia. I can't feel any love for my family. You know, a way I describe it, and it's a horrible thing to say, but like my parents could drop dead tomorrow and I would feel nothing. Um, and I actually did have a friend who unfortunately did pass away post PSSD and I felt nothing. And I just want it's important to say that I think it's it's it's it's a horrible horrible thing.

[00:44:49]It's a terrible form of suffering. Um, and uh, so feel nothing for my loved ones. Um, you know, uh, yeah, I think that's pretty much my symptoms. So basically like you know a complete complete complete destruction of my life in every single way like complete destruction. Um and you know uh I was very you know basically uh was bedridden for a lot of the period of time. Um like I told you before we were talking um I'm functioning a little bit better now but symptomatically I'm just as bad. I'm you know it's uh and my symptoms did get worse over time. Another one that's important to mention is this severe derealization. It feels like that's persistent and never ne never uh gives gives gives at all. And it basically feels like I've been drugged. I've been kind of slipped a drug or like I'm kind of like not connected to to the world around me. And it's just a terrible sensation to be experiencing all the time. Uh it's really really terrible. Um so severe derealization and yeah I mean another way that to describe it is that in my case it feels like just like my nervous system has been completely broken and that like my body is and mind are in a state of just extreme extreme distress from what happened to me. And like I think that maybe prior to reinstating the medication, I was experiencing a little bit of um dysregulation, but of course was still highly functioning and stuff like that.

[00:46:29]And just like the reinstating the medication literally just took it and just broke. Feels like my nervous system is completely broken. Like I could just be lying there and I it feels like my heart is racing. Like there's no feeling of relaxation or calm. There's no feeling of restfulness. It's just this feeling of complete nothingness in terms of anhidonia and this concept of extreme conceptual distress about what happened to you know your life basically being over um and uh and what's going to happen to you in the future because you know uh uh there are many sufferers who are basically you know just not able to work and I'm I'm working a little bit more now but you know a A few months ago, I was completely I could barely brush my teeth. I could barely take a shower. Um and uh you know, it's kind of like what's the point of doing anything when this happens to you? Like what's the point in paying your bills? What's the point in in doing anything? You can't feel love for the love of your loved ones. You can't you know, what's the point? What's the point in any of this? So, uh you know, uh it's very distressing, you know, because you're uncertain about your your it's you know, your future becomes very grim, right?

[00:47:42]And it's like if you can't work, you can't really take good care of yourself, you know, what does that mean for what's going to happen to you? You know what I mean? So that's it's terrifying. The symptoms are terrifying, but also the outlook on your life is just completely terrifying. I mean, so yeah. I mean, again, that's sort of like a long-winded answer, but those are the symptoms that I'm experiencing. I probably forgot a couple. Um, but yeah, I tried to cover all of them the best I could. Yeah.

[00:48:09]>> Yeah. Thank you for listing that out, Stephen. Um, I'm so sorry you're suffering so much. I can relate to so much of what you said. Um, could you please um or how how have your family and friends reacted to this?

[00:48:25]>> Right. Yeah. So, um I think that um with uh you know uh many people or some people I should say I think with some people you know they're disbelieved by their family. Um you know in my case uh my family I think has been overall relative pretty you know of one they've been supportive but two they believe me um I do think that they believe that maybe there were some co-founding factors like you know like I I had anxiet a little bit of anxiety or that like you know I like to I used to I used to like smoke weed occasionally um [snorts] I mean no not occasionally like pretty regularly. prior to this. But, you know, in the period prior to PSSD, I think it's important to say for the 7 months I was off the medication, I was completely sober. I didn't drink. I didn't do any drugs. When I reinstated the medication, I was the healthiest I'd ever been in my life by a mile. And, you know, uh it it didn't have it didn't stop me from having a severe case with the re reexposure. But, um [snorts] my family uh has been overall, I'd say, extremely supportive. That being said, I don't think they fully can possibly understand even though they're trying they're trying to. Um, and I also think that, you know, they've pushed me towards going back to therapy and doing things like that meaning well, but uh, you know, they mean well, they want me to get better. they want me to get uh you know go into say remission or improve but they can't fully you know it's it's even if they are supportive and and and do believe you I think it's important to say that it's really really hard if not impossible for somebody who's not experiencing to understand how terrible this really is and how much sufferers are suffering so I would say just to summarize my family's been very supportive ative. Um, they love me.

[00:50:25]They've basically taken care of me completely when I was, you know, as I've been non-functioning, bedridden, unable to work. Um, but they I still think that they can't really fully understand it.

[00:50:39]And I'm and and it might not be any fault of theirs, you know, but relatively my family's been pretty understanding. and my friends, you know, I used to have many many many friends like, you [snorts] know, I I uh I don't really kind of want to be seen in in this condition because like I feel like my personality is completely been erased, you know, relative to what my baseline was before this. Um, and that I, you know, also look look and feel terrible. So it's like part of you even though you don't uh you know like uh you don't feel anything you just like kind of like you know I don't really want to you know I'd rather not pe like some people not see me like this and kind of remember me the way I was before if that makes sense but my friends my a few friend although I've lost a large majority of my friendships due to this I am uh fortunate for the a few close friends that I have and they've been extremely extremely extremely supportive. One of them actually was on SSR, you know, and there's been a few of my friends who actually learned that this happened to me and then proceeded to make the decision to stop, not abruptly or anything like that, but stop using SSRIs because of the risk profile and learning what happened to me. Um, but yeah, my friends and family overall have been extremely supportive, I would say.

[00:52:05]Yeah, I'm really glad to hear that. And it, like you said, it's unless you're going through this, um, the the people around you, the best they can do is just believe you and and support you the best they can because you can only understand how bad this is. And if if if you're not going through it, you just can't understand.

[00:52:24]>> Yeah. And I I do want to say take this opportunity to say that like I I genuinely believe and I say this sincerely that severe PSSD is the worst possible thing that could ever happen to a human being. And I know that there are bad things that can happen and there are terrible other conditions and I'm not trying to take away from those. I'm just want to say that I genuinely believe that a severe case is the worst thing humanly imagine, you know, humanly possible. And uh you know, I might sit here and look like I'm in decent shape, but I I do want to say that I I believe sincerely that it is the worst thing humanly possible. And that, you know, if you ask severe sufferers, they will tell you that they would take these other horrific things, you know, again, like uh you know, they would, you know, they would trade places with a lot of people basically. Um, you know, so >> suffering is unimaginable.

[00:53:25]Um, and finally, do you feel like you had enough warning and information about the possible consequences of taking um Lexa Pro uh to provide informed consent?

[00:53:37]>> Uh, no, 100% not. There was never anything that was said to me. If I was told that there was a a possible risk of uh of this happening uh either while on the medication or persistent, I would absolutely never have done it. Um you know, and uh and yeah, like uh not not in a million years. No, there's no there's there was no no informed consent given to me. Um, and if I was if I even knew PSSD existed, I I would I wouldn't have ever I would have never not even close. Like my circumstances were not so severe that I desperately needed something. Uh, and as I mentioned, in fact, you know, I did better off the medication. I just kind of was caught in this sort of like two week period moment of weakness, you know, relative. Um and uh and yeah, like I I definitely think that uh it's it's a real real injustice that people are not being warned. And uh you know, us warning people, again, I don't think it's not going to change our symptoms or cure us necessarily, but you know, absolutely we can prevent other people from, you know, going down the same path that we did. and and uh at least people should have the right to know and make a decision for themselves. And uh and you know, I just want to say, you know, like thank you for the work you guys are doing at Moral Medicine. I think it's an extremely important work that you guys are doing and uh you know, thank you for having me on here. Um but yeah, it's uh um it's something that's just uh changes need to happen. there, you know, like uh it absolutely needs to change. It it should be a last line of treatment for people, not a first line of treatment just given out kind of like, you know, candy. And uh and people need to know that, you know, there are risks that this can happen. Um and uh and that's why I wanted to come on here, you know, and and uh and share with you guys.

[00:55:49]>> Yeah, very well said. Thank you, Stephen, for for all your contributions um to the PSSD and PFS community and all of us. And um I really appreciate you taking the time to speak with us today.

[00:56:02]>> All right, Grant. Thanks so much. And uh you know, we'll keep in touch and uh thanks again for having me. Okay.

[00:56:08]>> Yeah, of course. Thank you.

[00:56:10]>> All right. Take care.

[00:56:11]>> You too.

[00:56:13][music] Hey, hey, [music] hey.