How Schizophrenia Starts - My Experience with the Prodromal Phase

How Schizophrenia Starts - My Experience with the Prodromal Phase

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- Hi, everyone. In today's video, we are going to be talking about how schizophrenia starts and we know what that looked like for me, what my early warning signs were, and we're also going to be delving deeper into what exactly the prodromal phase is. (gentle piano music) Welcome back to Living Well With Schizophrenia channel. If you're new here, my name is Lauren, and I make videos about what it's like to live with schizoaffective disorder or schizophrenia. And if you would like to see more videos like this one, make sure to subscribe to our channel, and also if you would like to help support the creation of future videos like this one, please make sure to check out the link to our Patreon pages in the description below. Through that we offer access to our Discord server which offers peer support to anyone who is a patron of ours and, you know, we're offering peer support groups through video and also just peer support through text chat. And so that, if that's something that interests you, definitely check out our Patreon page. All right, so what exactly is the prodromal phase of schizophrenia? Basically the prodromal phase refers to the period of time before the psychotic symptoms actually
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or the first psychotic episode happens. And so it's kind of a period of time marked by changes in behavior. It's estimated that about 75% of people who develop schizophrenia, go through this prodromal phase. And so that's quite a high number of people who end up developing schizophrenia that experience this period of change in behavior. And it can last anywhere from a few weeks to over years of time. So I'm going to go over some of the signs and symptoms that may characterize a prodromal phase of schizophrenia, but something that I do want to draw your attention to, and kind of, you know, emphasize early on is that, you know, these signs and symptoms can be markers for a lot of different things. Just because you're experiencing the signs that I'm going to go over about the prodromal phase, does not mean that you were going to develop schizophrenia. It can be an early indicator of a multitude of different mental illnesses such as depression, anxiety, bipolar, or it can be, you know, warning signs for other health issues.
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And so it's really important that if you are identifying with any of the signs or symptoms that I'm going to be going over in this video, to bring it up with your doctor and to have a conversation about what could potentially be going on, but to not jump to conclusions that you were going to develop schizophrenia because that it's just not, it's not a cause and effect sort of thing. The prodromal phase of schizophrenia does not happen to everyone who develops schizophrenia and also people who experience the signs and symptoms that exist in the prodromal phase of schizophrenia don't necessarily develop schizophrenia. All right, so one of the kind of main signs and symptoms of the prodromal phase is, you know, issues with memory and issues with paying attention and staying focused and that kind of thing. So this can be one of the early indicators that things are kind of changing. When you have this change in behavior around your ability to focus, your ability to pay attention, and your ability to access memories. Changes in mood can also happen or mood swings or mood fluctuations. Depression may be something that people experience
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during the prodromal stage and even sometimes feelings of, or thoughts of suicide. And so, you know, this is a pretty serious one, it can be potentially serious, but again just be because you're experiencing depression or mood swings or what not does not mean that you're going to develop schizophrenia but it is often a characteristic of the prodromal phase of schizophrenia. Another early warning sign is energy loss or, you know, lack of energy to do things that you used to do. Also sleep disturbances may crop up, weight loss may occur because you are just not interested in eating meals anymore or you are just not able to keep up with that as much. You may also lose interest in things that you once cared about. And so this can be anything from hobbies and interests to socializing and interacting with friends and family. There could also be a marked drop off in your ability to perform at work or in school or things like that. People around you may start to notice changes in how you look. And this is largely to do with not being able to keep up with personal hygiene.
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Some other things that might crop up or that you might become aware of that are happening that are a little bit odd, or, you know, not what you're used to are hearing or seeing things that aren't there. And of course, this is kind of an early warning sign of psychosis or schizophrenia. If you're starting to hallucinate or have differences in perceptions or that kind of thing, just oddities in terms of your perception of the world. Also kind of an early indicator is oftentimes kind of an obsession or interest in religion or the occult or things like that. So a really important thing to point out is that people who access help and support while they're in the prodromal phase before, you know, they have their first episode of psychosis often have a better prognosis in terms of the treatment of their schizophrenia if it progresses to that. Now this is a really hard thing to do because like I said, the prodromal phase of schizophrenia is often, you know, looks a lot like depression or looks a lot like other health issues. And so it's very, very hard to know
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that it's the prodromal phase of schizophrenia even for a doctor or a psychiatrist who's treating you. Oftentimes it kind of has to wait until you have that first episode of psychosis to be sure that you are developed or that you have developed schizophrenia. So it is hard to treat during the prodromal phase. But what I would recommend is that if you are experiencing some of the things that I just described as being characteristics of the prodromal phase, to just go to your doctor and let them know what's happening so that you are opening up the line of communication and you have access to supports before things get to a critical point. And then if they do get to that critical point, hopefully then you already have access to care and you'll be able to get treatment quicker and, you know, early intervention in psychosis is something that is stressed a lot because the prognosis goes way up if you have as early intervention as possible. And so getting connected as early as you can is really important. All right, so now I'm gonna get into my own experience with the prodromal phase and what that kind of looked like for me.
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So I think the most marked change in behavior for me happened during high school. And I began to just have this really intense sense of apathy towards, you know, kind of everything, towards my social engagements, towards school in particular because obviously in high school, that's kind of a main focus of your life when you're a teenager, and I began to skip a lot of classes in high school and I, my grades took a marked decline decrease because I just didn't really care. I wasn't, you know, up to that point I had been kind of like an honorable student, model student, and always excelled in school, but, you know, in high school that really changed quite drastically for me. And so that was definitely an early sign that I was in the prodromal phase of schizophrenia. This is also when I first started to experience the concept called thought broadcasting. And this is where I thought that people around me or other people could hear my thoughts. And so this made me kind of nervous in social situations
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because I thought that people could hear what I was thinking. And so, you know, I would, I've mentioned this in other videos that I would try to just think positive thoughts all the time and think really nice things about people because I didn't want them to, you know, hear negative things that I was thinking or to hear, you know, private thoughts that you don't necessarily want people around you to hear. So was kind of, that hindered my social abilities. Throughout this time in high school too, I really began to develop, you know, social awkwardness doesn't really do it justice the level of social awkwardness that I exhibited and it wasn't with everyone. I had a core group of friends that I was able to interact fairly regularly with. They did describe me as kind of odd, (Lauren chuckling) you know, like I had quirks that, you know, that are like, "Oh that's just Lauren. She's just kind of weird sometimes." But with people who I wasn't as familiar with and especially, you know, around like the popular kids in high school and stuff, I had a really, really, really hard time interacting
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and, you know, being social. And so I remember one particular instance, I think it was in grade 11 or grade 10 or so, where a boy I liked invited me over to his house, invited me and my best friend over to his house to hang out with him and his friend. And it was kind of this double date and we were gonna watch a movie and whatnot. And I just, they sat down to watch the movie and I was standing behind the couch and I just remember kind of leaving my body. And I just kind of checked out from the side social situation. And I stood frozen behind the couch and they were like, "Come. Why don't you come sit down?" And I just didn't say a word. I was silent for basically the rest of the evening and I didn't move. I was completely stiff and could not move my body. And I just stood there behind the couch for the entirety of the movie, and then I left. And, you know, revisiting things like this is like painful because it's very embarrassing that I did things like this.
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And, you know, I was mortified at the time that I wasn't, that I wasn't engaging and that I couldn't engage. I was just frozen in my body and it was a weird experience. And this happened quite frequently where I would just check out from a social experience or social interaction and not say a thing and not move and I just couldn't interact in a typical way. So this was kind of my experience in high school. And I did begin to experience more fluctuations in mood where I was, you know, feeling the first inclinations of depression. But when I started university, so the year after high school when I was 18 or whatever, I fell into quite a deep depression and I struggled with this for quite a few years. And you know, thoughts of suicide surfaced, and I struggled with that as well for these few years. And the social awkwardness kind of just got more intense through my first years of university. And I remember, you know, like again,
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I could interact well with people I was comfortable around. So I was very comfortable around my boyfriend and so I could interact with him comfortably but he would take me to, you know, parties with his friends from school, and I just wouldn't say a word all night to anyone and, you know, looking back, that's weird. (Lauren laughing) That's weird to go to a party and be social and just not talk to anyone and not say anything and like look for a wall to stand against. And I just wanted to recede and withdraw. And that was kind of how I socialized throughout university which obviously created problems in terms of my ability to form relationships with people and my ability to form friendships. So that was kind of hard. And, you know, it's again, hard to think back to that because, you know, that had a lot of implications for my life and I think ultimately that made my depression even worse. And so it's kind of this huge, you know, spiral that you can get into during the prodromal phase
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of different symptoms making other symptoms worse and just kind of, you know, spiraling toward your first episode of psychosis. And that's kind of what happened for me. I did this in other social situations too, not just parties. So my first roommate that I lived with, we didn't really talk and it was primarily my fault. You know, she was also quiet and I was quiet but I took it to an extreme where I would just hide in my room and I wouldn't talk to her unless she like sought out engagement with me. You know, sometimes she would ask me to, if I wanted to go have a beer outside in the back and I would begrudgingly be like, "okay," and then just proceed to be as quiet as possible and not really engage. And, you know, again, this created issues in terms of being able to connect with people in my life. And, you know, when I moved in with my second pair of roommates, I was sleeping too much and the sleep disturbance had started to crop up and which made it harder to engage with them as well. And then when I ended up moving again and I lived on my own for awhile,
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I went through a period where I just didn't really sleep or I didn't sleep very much. And I would stay up all night, you know, I had oddities in my behavior, I would set, like I had a bedroom in my apartment where I lived alone but I would set up a makeshift bed on the floor of my living room and just camp out there overnight so that I didn't have to go to bed. And I would just camp out there and either watch TV or play games or read or whatever, but it was kind of weird, you know, looking back that I just stayed up all night and tried to occupy myself with things. When I lived alone, this is also when my eating disorder started to flourish and I've talked about this in the addiction video, we can link to that below. Everything that was kind of happening during this prodromal phase and the snowballing towards developing schizoaffective disorder was really really hard on me. And so I turned to disordered eating and, you know,
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being meticulous in that realm of my life in order to deal with everything that was going on. And it was really just essentially a maladaptive coping strategy to deal with all these other things that was going on, the depression, the social awkwardness, and, you know, all these other things that were going on and culminating in the development of schizoaffective disorder. During these first years of university, I also developed a bit of an obsession with religion. And I really, really wanted to find a religion that spoke to me. And so I did a lot of research into a lot of different sects or branches of religion and I went to a few churches and got a little lost in exploring that for a little while. That didn't last too long 'cause I kinda got scared away by intense experience going to one of the churches, but that, you know, that's another early warning sign is kind of infatuation with religion and with things like the occult and things like that. I also was slipping in terms of my performance
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in school during my first couple years of university. I wasn't doing very well. And you know, it's not really that surprising because I was, still have that huge sense of apathy that I had in high school. And so it was very hard to engage in university even though I was taking classes that I thought I liked and thought I cared about, I just didn't have, I couldn't connect with things that I used to care about. So even though it was, you know, subjects and classes that I used to find interesting and that I thought I would find interesting, I couldn't connect with that. And I, you know, again, like I was talking about before when I was listing symptoms or signs of the prodromal phase it's very hard to connect with things that you used to derive pleasure from when you're in this prodromal phase. So that was kind of the experience that I was experiencing throughout my first degree in university. And then when I started my second degree in university, that was kind of when things really started to shift. I still had the social awkwardness thing and I, you know, things shifted to where the depression became
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very very hard to deal with. And I was experiencing intense feelings of, you know, thoughts of suicide. And so I decided to seek out help and I sought out counseling services at my university. And, you know, again, the social awkwardness thing came into play where, for the first like few weeks, possibly longer, a few months, I he would have like a weekly session with my counselor every second week or so and I just wouldn't say anything. I just wouldn't talk. Or I would give the very bare minimum responses to what he kept asking me. And it was a very awkward experience. And I thought that's what therapy was like, but it's not. (Lauren laughing) You're supposed to talk and engage with your therapist. And so that was probably like another, you know, early warning sign that I was in the prodromal phase, was that I couldn't communicate and I couldn't connect with other people even people who were trying to help me through this mental health struggle. And through this kind of first year of my second degree, things kind of started to ramp up in terms of experiencing hallucinations and, you know,
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having more of that psychosis element at play. So I began to have olfactory hallucinations where I would smell these really, really terrible smells. I thought that I had, I thought that I stunk most of the time. I thought it was really awful bio mixed with something putrid and it was hard. You know, I was, it made me even more awkward in social situations 'cause I thought that everyone was smelling me and thinking I smelled awful or, you know, it was just causing me stress and I was just smelling awful things everywhere I went. I also began to hear my name spoken aloud when I was, you know, in crowded places or at school or wherever, which obviously I would just brush off thinking, oh, there's probably someone else named Lauren around here who someone else was calling and then, it's nothing. But then that kind of started to happen when I was alone too and it became harder to brush off, but I still did brush it off thinking that, oh, my imagination was just overactive and over firing and it's fine. I brushed it off thinking that it wasn't really anything. So this is basically what the prodromal phase looked
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like for me, because then shortly after this all started happening, I had my first psychotic episode where I had the full-blown hallucinations and delusions. And I ended up being diagnosed with bipolar, with psychotic features, which then was later changed to schizoaffective disorder because the psychotic symptoms were continuing without a mood episode present. But anyway, I had a psychotic episode. So all of these kind of, you know, early warning signs. I can now look back on and think, "Oh yeah, that made sense that this was all building and building and building up until my psychotic episode." However, when you're going through this, it's very confusing and hard to put together that something is building. And so, you know, that is why, again, I just want to encourage you to, if you are noticing changes in your behavior or changes like the ones that I've described in this video, talk to your doctor, get connected with a medical professional who can help you kind of navigate what's going on and maybe,
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you know, try some different kinds of treatments to hopefully prevent a psychotic episode. But again, it is very hard to treat, you know, schizophrenia during this prodromal phase, because again, it can be signs of so many other things as well. So I just wanna remind you as well that if you are experiencing these signs and symptoms, it does not mean that you are going to develop schizophrenia. It can mean, it can just be changes in your behavior that don't really mean anything or it can be you're developing depression or another mental illness or some other physical ailment. So I would encourage you again, to talk to your doctor, explore what could potentially be going on and get help if these symptoms are debilitating for you in any way or if they're causing you distress in any way. All right. So I hope this video was helpful in terms of describing a little bit more about what the prodromal phase is, and what it looked like for me. If you have other signs or symptoms that you experienced during the prodromal phase, let us know in the comments below, we would love to hear
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what other people's experiences have been like with this. And just a reminder that if you wanna see more videos from us, make sure to subscribe to our channel. And also if you would like to help support the creation of future videos like this one, please make sure to check out the link to our Patreon page. Thank you so much again for watching and as always, wishing you and your loved ones good health. We'll see you in the next video. Bye.

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