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My first episode psychosis started June 2013, after a very stressful period which lots of problems happened at the same time and after some sleepless nights. For one week I was living in another world! I completely isolated myself and had lots of delusions and paranoid thoughts.


I was thinking there was a conspiracy and all my family and friends are plotting against me. I was thinking they are controlling my internet and watching me through hidden cameras. I thought that I had a tumor or very dangerous illness and they are not telling me the truth. I was thinking they have spoken with a psychologist and he is telling them what to. All Facebook posts and emails I was receiving was a part of that plan. I didn't know what I am doing and I was writing crazy stuff on Facebook, thinking everybody is following. I also had a very strange and strong headaches and I was taking whatever pill I could think of, but none of them was working. I also had some recurring thoughts, for example reading the same comments 100 times or listening to the same music from dawn to dusk. My brain was like in a loop with obsession to specific thoughts. I didn't really know what I was doing.


After that horrible week, one night I slowly remembered what I did and wrote. I realized that something is wrong with me but I didn't know what! I thought that I am becoming crazy and I cried a lot. In the morning I was calm and I thought that everything is finished. I was very happy until the headaches started again in the evening. At this point I went to the ER, and after many tests including brain MRI and Lumber puncture, the neurologist said I don’t have any physical problems and probably I have psychosis.


I didn't accept that and until the end of August I still believed that I don’t have psychosis and the doctors are not telling me the real problem. They started treating me with Abilify which made me tired and after several days I had restlessness. I can say it is the most horrifying feeling in the world. I had some strange dream-like feelings and I was thinking I’m dying. Every day I was thinking of how to kill myself. I never thought that I could become better. My situation got worse and doctor stopped the Abilify and started Risperdal. After a while I had restlessness again and some very devastating feelings. Doctor reduced the dose and with this change the situation became manageable. But the problems with Risperdal was that it blocked my brain. I couldn't do anything and I was just lying in bed waiting for time to pass. After some weeks I had very severe anxiety and many panic attacks. I was thinking I was becoming crazy and I was suicidal. Doctor gave me Lorazepam and Valium on demand. I also had problems sleeping, having nightmares and night terrors. Doctor gave me some addictive sleep aid pills so I could sleep.


In this horrible three months, I was still delusional and I was still thinking people are following me wherever I go, or monitoring me through cameras and so on (But I was thinking everybody is trying to help me!). Doctor said probably I have paranoid schizophrenia but he wasn't sure. Last week of August, I was less delusional and the doctor stopped Risperdal because I couldn’t do anything and my body wasn't adapting to it. But soon after, that strange headaches started again.


So doctor started Zyprexa 5 mg and warned me about the weight gain and diabetes possibility. I started a diet and going to the gym. Fortunately, not only I didn't gain weight but I also lost 7 kilograms on it. Zyprexa was a miracle drug for me and all the delusions disappeared and I finally accepted my illness! My anxiety and panic attacks also get better. I reduced the dose to 2.5 mg after a while and I could sleep without sleeping pills.


But after a while, I went into a severe depression and mode swings. I didn't have motivation for doing anything and I was sleeping 12 hours a day. Doctor gave me Cipralex (Lexapro). After just a week I had a terrible anxiety so I discontinued but the anxiety didn't go away! After that I struggled with anxiety for several months. I was using Xanax, Valium, Rivotril, etc. to calm down.


In March, doctor started 10 mg of Prozac and my depression and anxiety got better after several weeks. In May, I reduced Zyprexa to 1.25 mg and after 2 weeks I stopped it. But severe anxiety and bad feeling started and I restarted taking 1.25 mg again. Since 2 weeks ago (July) I reduced to 0.625 mg and had a little anxiety and insomnia. But it went away after some days. I’m now quite well but still tired in the mornings. I can do my everyday tasks but I still have problems with concentration. I am planning to stay at this dose and after some weeks make it every other day and then cut it off.


Is this a good idea to stop taking Zyprexa since I didn't have delusions or paranoia for about one year and am feeling normal? My other question is I don’t know what exactly my illness is!! If I had a first episode psychosis and fortunately I will not have another episode, or I am Schizophrenic?


Thank you for reading my long story. Any comments would be appreciated.


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I would say that one year is probably not long enough of being psychosis free to safely go off of antipsychotics.  I say this because I've had basically this same discussion several times with different doctors.  I have been psychosis free for three years and am still taking an antipsychotic, although at a low dose.  Although I guess my situation is a little different in that I've had like 3-4 psychotic episodes.


The thing is, psychosis is thought to damage your brain, so it's something you want to avoid having again.  And it sounded like your psychotic episode lasted a while, so maybe you would want to be extra cautious.  


You could try going on another antipsychotic with less sedation.  For instance I take latuda and, while it sedates me at night after I take it, I do not feel sedated when I wake up in the morning.   

Edited by koa
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greetings and welcome :)



i don't' know, man... i can't say. the post you wrote...many parts of it resonate strongly with me.


even now, and it's like..............twenty one years since my first hospitalization/diagnosis. i am suspicious of paranoid schizophrenia as the ultimate means of manipulation and control and they've discredited me so they can run experiments with me now that they've got their neurotechnological implants and wiring throughtout and i'm convinced that's how i hear voices. and i've seen the them come and do it to me. non human, obviously. but because i'm discredited by this diagnosis ...they can do whatever they want.



that said.. i have never, NOT EVER, discontinued my medication and been better for it. the thing is, i think the my psychiatrist is problably just a physician trying to help and he's not in on it but buys the sickness model.


here's the key, for me: they've done what they've done and now the medication is the only protection i have. without it my thoughts are so jumbled and word salad and they can steal them and insert images. they also vaccum out my head sometimes. the ONLY thing that keeps me safe from being attacked is the medication. so...i get that you 1. don't have any hallucinations/delusions anymore and 2. your jury's still out on whether your actually schizophrenic or if it was a one off.


my opinion: stick with the medication for now. better safe than sorry. i know the side effects  can suck...but not as much as repeatedly cracking. my cognition is FUCKED UP at this point and the reason isn't meds. it's because i have had numerous breaks for years off and on...and then the past six or so years....i've been out of my head more than in....like...a lot more. and being psychotic has left me now needing cognitive remediation and i'm never without hallucinations ...never. it's given me persistent psychosis. i also struggle daily to set my "delusions" aside. it fucking sucks. so


my advice: give it to the two year mark. then ask your psychiatrist if you could try tapering off to see if symptoms return. that is the minimum number i've seen. i've also seen people say that after five years of stability one can consider coming off medication (supervised). but to keep the hallucinations/delusions at bay...you may always have to remain on it. if your side effects suck...ask about switching. if your cognition's worsening...check into cognitive remediation therapy... bottom line: it's too fresh...just one year...is not enough.


i did exactly the opposite as i'm advising you. and again and again and again and i may well do it again and again in the future. and it's fucked up my life a whole lot more than if i'd stayed on medication and been patient and tried to find a way to combat the side effects and so forth. if i could go back in time...let's just say: i have such regret. and...if i were in your position... i would continue with the medication.


hope that helps and, again, welcome x

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Nobody knows how you will be off the meds, not even the doctors. Someone I know has managed to come off meds soon after his first episode and he hasnt relapsed for 2 years now. But not everybody does this successfully (I havn't). You are predisposed to getting psychotic and medication will reduce the likelyhood of you getting ill again but that doesn't mean you will definatley get ill if you are med free. It can depend on triggers of the illness - know what your triggers are.


What you want to focus on is rebuilding your life, you have been through tough times. Get a job, a hobby and friends if you have found yourself isolated after your episode. Quitting a med like an antipsychotic at a vunerable or shitty time is allways bad. I know you may feel the drugs are affecting your concentration/mood/energy etc, but a lot of that can be post-psychotic depression, which can take a year or so to subside.


You might want to research about relapse after stopping an antipsychotic.


It's too early to know if you have a long term illness, that's why the doctor said you "might" have schizophrenia. Psychiatry is an art more than a science and the medication is used in a trial and error way. You might be lucky and have had and will only ever have one episode, but you may have developed a long term illness that needs treating as such.


Good luck finding the answers

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Thank you very much for your replies. I was at the last year of my PhD studies when the episode happened. Last year which I should have been very active to finish the thesis and find a job, obviously I did nothing. Now I'm in a very bad situation because it is not easy to find a job especially in my condition without motivation, energy and concentration! I am very desperate and feel like a big failure! 


Now in one hand, if I don't stop anti psychotic and can't motivate myself to study and find a job, I could go into depression and fall into a positive feedback that could goes on and on...On the other hand, if I stop the medication because of the potentially stressful and hard times ahead of me, I could relapse into another episode.

So, as all of you suggested I think probably it's better I stick to my low dose Zyprexa or change to less sedating anti psychotic.


Another thing I forgot to tell is that around one year before my episode I became very ill after drinking alcohol and had flu-like symptoms. I did the blood test and one of my liver enzymes was too high, but after some weeks returned to normal. But after that, whenever I drank alcohol I got sick for a long time. I stopped drinking all together after that and it remained a mystery for me. Any of you had this problem or know weather it is related to the illness or not?


Another mystery for me which even doctors didn't have a clue about it was my strange and severe headaches during my episode. I couldn't find on the internet any information that relates this kind of headaches to psychosis or schizophrenia. Anybody has experience with headaches during episode?

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I had stuff start this past April and lasting until...well, basically it hasn't stopped. It's not as intense as it was, though.


For about two months straight I had these weird headachey sensations. Like pressure in my head - sometimes everywhere, sometimes specific places. Also, occasional increased difficulty with proprioception like I didn't really exist in space where I appeared to be. Also one of the few migraines I've ever had with a visual aura.

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I had stuff start this past April and lasting until...well, basically it hasn't stopped. It's not as intense as it was, though.


For about two months straight I had these weird headachey sensations. Like pressure in my head - sometimes everywhere, sometimes specific places. Also, occasional increased difficulty with proprioception like I didn't really exist in space where I appeared to be. Also one of the few migraines I've ever had with a visual aura.


Your explanation matches exactly with mine. I usually had them in the afternoon and at night. Sometimes migrane like sometimes cluster like, sometimes behind my eyes, sometimes I was feeling my head is about to explode, sometimes it was dream-like state, plus all the feelings you described. When I started AAP it magically disappeared, but after a while when I stopped the medication it started again. But since last year when I started Zyprexa it never happened again. I don't know if I stop, it will start or not.


Did you have delusions and paranoia since April along with your headaches? Did you get any medical assistance and are you taking any pills? what did the doctor say about your headaches? 

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I tried to talk to my doctor and he told me to talk to my therapist.


I tried to get hospitalized but could not get anyone to take me seriously,. When I finally did intake at my clinic, I was unable to explain that I needed hospitalization. I was actually self-injuring and later was on the verge of starving myself because of what I believed at the time.


I was also hearing voices, but they're quiet lately.


I don't have any meds as yet. When I first saw my therapist in May I told her I definitely needed to see a psychiatrist, and she said she'd put in a referral. But on Friday she said she hadn't put a referral in yet, which was really frustrating to hear. 


Most of it I got used to and try to ignore it, but it still has an impact on my thoughts and behavior.


As for what it was - everyone I live with was in fact an imposter, and I wasn't even sure if I was in the same universe I was born in. I also knew they were monitoring me via sympathetic magic (monitoring through pictures) and the use of some technology (such as a device in the kitchen that makes a constant whirring sound).


I don't know that any of that is not real. Like, it is easier to consider the possibility now that it may not be real, but that's much the same as considering the possibility that I might win the lottery - it seems pretty unlikely, but would be nice if so.


I had the dream like effects (and sometimes still do) but I never linked it to headaches. And yeah, I had cluster and migraine-like effects, although it rarely progresses to the headache part, thankfully. Mostly just the auras.

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Also I am pretty close to avoiding people as frequently as I was in April and May, so I am not sure I am doing "better" so much as at least sounding more lucid about it.


I exactly understand you and believe me, last year I was thinking exactly like you. I was thinking people around me are imposters and many other strange conspiracies. I had constructed my own strange inner world and inside this world all the things were making sense. I sometimes becoming skeptical about my thoughts but I could find lots of evidences to support my delusions. It was only after I seek medical assistance and took my meds that I slowly become better and realized that all the things I was experiencing were part of my illness.


So, please immediately search for a good psychiatrist, because the earlier you start medication the better. If possible, ask your friends or family members to help you. It is not a good idea to isolate yourself in this situation.  It's not good to stay in this mood for a long time and I assure you that you can recover as soon as you find the right medication.


Let me know about your progress. I would be happy to help you with my experience. 

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I should have seen a psychiatrist by now but my therapist didn't set up a referral during my first visit two months ago, despite leaving me with the impression that she had.


I've had a lot of help from friends. I don't trust my family.

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my therapist didn't set up a referral during my first visit two months ago, despite leaving me with the impression that she had.

This infuriates me! Not only because it's been as long as it's been and I feel like the life she's stalling on isn't hers and that's unethical, like now fucking long can a referral take? Well, forever if she doesn't actually fucking do it.

Inhave a number of thoughts, but I'm glad it's established that she didn't and hopefully she now has. I'm so sorry. Sympathies x

(I do think this exactly illustrates the problem with a referral only process. x)

Edited by mellifluous
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