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What was your first psychotic episode like?

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What was your first psychotic episode like?

Postby superanonymous » Fri Apr 29, 2011 5:47 pm

Hi Everyone,

I'm new here and have a child with Psychotic Disorder-NOS. I've decided to use my creative outlets to write a fictional story about psychosis in an effort to work through my own issues in caregiving and also to bring about more awareness and understanding.

I was wondering if any of you would be willing to describe the first time you had a psychotic episode. How old were you? What happened? What were the events/feelings leading up to it? How did it resolve?

My only experience with psychosis has been with my son, and I'd like to get a better understanding of what it's like for others.

Thank you!
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Re: What was your first psychotic episode like?

Postby maddogmaddy » Sun May 01, 2011 12:38 am

I've answered this to many doctors, and it still makes me shudder a little bit.

My psychosis is daily, but I'll speak regarding my psychotic break.

I was 25 (it was just last fall; my initial diagnosis was made during this period) I was rapid cycling, up to a dozen times a day. My behavior was very erratic, ranging from depressed and withdrawn, to manic and bubbly and social, to completely off in a different world, to highly agitated and paranoid. While manic I spent and spent and spent money. All the other times, I was just another very wierd, awkward college kid. When the psychotic break actually started, I was manic from the time I woke until the time the sun went down. As soon as the sun set, I'd go into a mixed episode; extreme paranoia, agitation, crying, screaming, rocking myself. I heard commanding voices, telling me to "go away" and "die", etc. I saw demon faces in my windows. The dark terrified me; I was convinced the dark was a "force" of sorts, some physical thing, that was literally closing in on me. My house was my safe place, but not safe enough. Because of all of this, I hardly slept at all. I was terrified to sleep. Eventually, I'd be so exhausted I would just pass out wherever I was. Many nights I never made it to my bed. I'd wake up the next morning feeling perfect, amazing, full of life and energy. The cycle held steady for almost two solid weeks. By the time I saw a dr on emergency status, I was so agitated during the day that I couldn't even look another person in the eyes, I couldn't sit still. I could barely read or write.

In short, it was the most horrifying thing in the world.

I took meds for a few months, I suppose just long enough to kick all this junk into submission. I then stopped taking my meds, and have since been off them long enough for the drs to establish I'm not just biploar, rather schizoaffective. I hallucinate daily, but I'll gladly take this over a repeat of that psychotic break. I'm pretty sure I wouldn't make it through alive a second time.
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Re: What was your first psychotic episode like?

Postby superanonymous » Sun May 01, 2011 1:55 am

Wow. That is INTENSE. I may need some time to process that. It sounds horrifying. I'm glad the meds kicked it into submission, and I hope it NEVER happens to you again.

So do you differentiate a psychotic break from the daily hallucinations?

My son definitely fantasizes daily, and I have noticed a difference between those fantasies and when he gets super agitated. And agitated it probably putting it very mildly. Thank you so much for sharing this information. I really do appreciate it.
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Re: What was your first psychotic episode like?

Postby Leon1301 » Sun May 01, 2011 12:48 pm

I developed a belief that the UK magician Derren Brown was talking to me through the tv set. I heard voices every moment I was awake, calling me names, telling me to die and even talking among themselves commenting on my actions. I hallucinated the Devil and came to believe Derren Brown was the devils disciple and was harassing me. When I went for a psychiatric appointment I demanded that Derren Brown be arrested for harassment or I would take matters into my own hands. It was then that I was diagnosed Paranoid Schizophrenic or Schizoaffective. She wouldnt determine which of the two it was. One night I ran away and hid under a bush in a wood as I felt unsafe everywhere and hoped to just die in the cold.

I was put on Risperidone. My voices cleared up entirely and my delusions stopped. However, after around 15 months Risperidone stopped working. I was put on abilify and have been going through hell ever since. I am now transitioning to Zyprexa.
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Re: What was your first psychotic episode like?

Postby Buddha443556 » Sun May 01, 2011 2:01 pm

Probably started when I was 4 in Florida, I had a little conflict on the play ground at school. I throw one of my classmates into a tree because "He was making too much noise." Which was not a good enough excuse I guess. That created an uproar in that small community and we upped and moved to Philly. Had a few more conflicts there but no one noticed them. Then I wound up in special education in grade 2. Special education seemed a lot like normal classes ... that's because the first six months I had a long term substitute with absolutely no experience in special education. I remember the whisper and everyone seemed to be talking about me. Though I could never catch them talking. I remember I was always thinking that I forget to put on my pants. I'd check, OK we have pants on. 5 minutes later, I'm going through the same thing-- the disorganization severely effects my short term memory. At 5 years old I was taking care of myself which is why I was worried I forgot the pants-- I was a latch key kid. The class room was in the basement and always seemed dark to me. We could see the other kids playing outside but we never went outside which was fine with me. My more than 6 month psychotic episode went completely unnoticed and was misdiagnosed as dyslexia and a speech impediment. I was only in Philly a few more months before we moved again. It took couple more years to recover. The NJ school system figured out there must have been a major mistake made in Philly after they gave me an IQ test. They mainstreamed me and shipped my records off to a parts-unknown. Second misdiagnosis.

My hallucinations, are better described as illusions, everything is warped and twisted. My mind can make a brightly lit room look like its lit by a faulty 2W night light. Shadow have a life of their own. Everything looks threatening and everyone. I can have a conversation with someone and I'll hear something complete different from what was actually said. When I see a new doctor I always call twice to confirm the appointment because of this. For me the more disorganized I get the worse the hallucinations. By the time it affects my speech I am seeing things that aren't there and having a conversation with myself. Before the antihistamines, this would go on anytime-- brief psychotic breaks, might last a few minutes or a few weeks. In retrospect, I recognize the episodes but at the time I had no idea I was psychotic. I still have trouble at times recognizing psychotic episodes. The disorganization is much easier to recognize.

Childhood onset has a very poor prognosis, sorry any child has to endure this. :(
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Re: What was your first psychotic episode like?

Postby superanonymous » Sun May 01, 2011 3:12 pm

Wow, Buddha. I've never met an adult who has had psychosis since being a child. Thank you for telling me your story! I wonder why all the misdiagnoses when you were a child? I see that with my son, too. His psychiatrist and neuropsychologist absolutely agree that he has Psychotic Disorder-NOS. In fact, the testing shows his psychosis. The three times he has been hospitalized (at 4, 5, and 6 years old), the hospital said it's PDD-NOS. I'm sorry, but most kids with PDD-NOS don't get hospitalized for a month at a time every year! Even his current private psychologist says that she thinks he just has "maladaptive coping" or dissociation instead of calling it psychosis. I mean, I guess you could call it that if seeing things and having bizarre delusions is "maladaptive." My son's psychiatrist is the best, and he has told me, "Let them call it whatever they want to call it. As long as the treatment is working, who cares what they call it."

Anyway, your story was something that I could definitely understand. It is so hard to get this diagnosis as a kid, because most people don't believe it. Plus, kids are psychotic anyway! I mean, I had an imaginary brother who was a game show host and lived across the state from me when I was three! I think that's why it's so hard to tell with kids. Is it just an "over-active" imagination or is it something more?

With my son you can tell it's something more because the delusions are relentless. This morning he was convinced he was the skeleton of a T-Rex, which is why he wasn't able to use the toilet. Skeletons don't pee! And, taken on it's own, it could just be the active imagination of a child. But this type of thing happens everyday and sometimes all day.

My son can do the same thing as you say happens to you -- changing the moods of a room. I know when he is having trouble because all of a sudden, he will curl up and cover his ears like there is something horribly wrong. If I see it, I can usually call out his name, and he will run to me for help. And he will tell me that things are "getting spooky." But that's all I know. I don't know what he hears or sees because he doesn't tell me about it. He doesn't want to talk about it.

Also -- he is just absolutely disorganized and distracted all the time. When he isn't, he's in his fantasy world or playing a video game or watching a movie. Those are all peaceful times for him.

Anyway, I was really touched by your story because as a parent watching a child going through this, I could relate. How old are you now?

Leon1301: How old were you when you developed that belief about the magician? Before that "break," were things in your life pretty normal? Was it that one day, everything is fine...and the next day, you start thinking about the magician? Or was it gradual? Did something happen in your life before it that put you under a lot of stress?

I ask all those questions because I notice that with my son, when he feels stress or anxiety, that's when he's much more agitated and I assume has more evil or terrifying thoughts. I only know my son, and I don't know what it's like for others. Is it the same way with you...that stress seems to make things worse?

My son was on risperidone for about 6 months. The side effects from it were awful -- it was like he was drunk for the first hour or so after taking it. Also -- and this is really weird -- he seemed MORE psychotic on it. He's been taking Seroquel in low doses on and off for a number of years, and that seems to help. But again, if the dose gets too high, it seems to do the opposite of what it's supposed to do. I think part of it is that he is still a child, so the meds don't affect him the same way. Anyway, if the Zyprexa doesn't work for you, maybe Seroquel will. I know it is so hard trying to find the right medication. I wish you luck with that.
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Re: What was your first psychotic episode like?

Postby Buddha443556 » Sun May 01, 2011 6:53 pm

I'm 43 now.

There is cognitive impairment with any psychosis however a cognitive deficit is usually another bad sign-- an IQ test would be a good idea to establish a baseline.

Antipsychotics do the same to me, I develop serotonin toxicity, which agitates me and makes me a very scary person. The reason for my abnormal serotonin levels is cancer. Mastocytosis is basically bone marrow cancer.

There are no medical test that show psychosis ... there's none for schizophrenia either. The reason for the different diagnosis is because they are simply opinions with no basis on any hard evidence. They're snap-shots of behavior-- usually at the worst times.

Don't forget the medical side, when I was 5, I had a rash and if they had identified that rash then ... well thing would've been much different.
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Re: What was your first psychotic episode like?

Postby Leon1301 » Sun May 01, 2011 8:54 pm

I was 28 when I thought the magician was harassing me. The background was that I had already been diagnosed with severe post traumatic stress disorder caused by the job I had at the time. I was getting ready to go to a specialist hospital for treatment and the fear of dealing with the pain I carried inside me helped to push me over the edge. As well as the PTSD I was hearing voices but those were of the victims in the incident that gave me PTSD. When I had the episode I heard voices I didnt know.
So it was a gradual period of decline and then the magician did a tv show and he was talking to me through the set. I believe all of my problems are stress related but that also I had an underlying predisposition to develop Schizophrenia/affective disorder. Stress makes everything ten times worse. Thats how risperidone stopped working. After 15 months of being relatively free of psychosis my dad got very sick. That started the voices off again and I had to try a new drug.
I was on 9mg risperidone and it made me so tired I would often sleep for 15 hours a time. It also made me feel zombified and gave me other side effects too. I have been on every anti psychotic of the new generation here in the UK. Seroquel did nothing for me unfortunately. I have just come off abilify which was an evil drug for me. The Olanzapine is definitely making me calmer but it is early days whether it helps me or not.
Good luck with everything.

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Re: What was your first psychotic episode like?

Postby Buddha443556 » Mon May 02, 2011 6:26 am

Good luck Leon, I have a few friends on olanzapine.
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Re: What was your first psychotic episode like?

Postby _mal » Mon May 09, 2011 7:39 pm

My first episode was last year, I was 17 and it lasted for maybe 6 months. It was hell. For about a year before this I was using a lot of dxm and lsd. I've always been a weirdo, mood swings, cutting, just self destructive. Since I was 13 I've smoked a lot of pot as well so this is probably my own fault. It seemed to start really quickly, one night I started hearing the voices of people I could only assume were somehow watching me through the gap in my closed curtains because they were discussing my movements and how fat I was and all this other pointless $#%^. I freaked out and didn't move or think that night, just listened and hated myself. I didn't sleep for days. I hallucinated that I was outside yelling at them to leave me alone but that was probably because I wasn't sleeping. It was constant. I heard voices all day every day discussing me, they could see out my eyes and hear what I was hearing and thinking and knew what my body was doing. I was convinced it was the people in the block of flats next door and become too scared to go past windows, go to the bathroom or shower or anything. Talking to my family was difficult because the people in my head were discussing them and judging them and hearing all this personal stuff that could get us in trouble. At the time I was really struggling with my eating disorder so that made everything really difficult as well. I was convinced there was a world above us where our real selves are and anything could happen up there, I was told I was an ugly old woman and that my eyes had been taken in a dream when I was younger. And that I was now being punished for the sins I've committed in this world, mainly lies I have told and people I have hurt. My best friend's boyfriend and brothers were up there, they cut out my stomach and heart and raped and beat me. This happened at night and I couldn't move, I felt it and I was begging for death because I deserved it. Scared the $#%^ out of my poor mother because I could only cry and she really didn't know what to do. But yeah, for a few weeks I was a empty nothing person because I had no heart and I ate food all day because I had no stomach. I would sit in the corner of the hallway with the doors shut crying. Then I decided to take control and somewhere along the way the voices decided to stop playing with me about this other world above, and that's when I figured I was telepathic. And then that everybody else was too, and somehow I'd done it and there were people coming to kill me. So I was blocking my thoughts all the time to try and keep my secrets. One day I was being told to eat my dinner 'like a ######6 dog and lick the plate, do it fast' or they'd kill my parents. I thought all sorts of things. Every day was a trip. I've been on olanzapine and risperidone but I gained so much ######6 weight that I'm off them now. Have been on quitiapine for a few weeks and coming off it these past two days. Hope it never happens again because it's messed my life up so badly, and hurt my family. I still struggle with meeting peoples eyes, thinking proper thoughts and leaving the house. Good luck with your son, I hope he gets better.
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