How did you know that you really have Sz or Sza? How many years had passed when you first realized or accepted you truly have this disease?

Diagnosed Sz or Sza
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Around 2003 when I was living in Australia I started to have symptoms of Sz: I smelled things such as coffee and vodka, also I had thought broadcasting. Around 2005 I got the diagnosis of Schizophrenia and started to take Olanzapine 10mg. After taking it for one year or so, the Pdoc told me I was cured and no need to take olanzapine any more. This Pdoc (an Australian) didn’t even bother herself to tell me to not stop Olanzapine abruptly. So I went cold turkey and suffered a terrible withdrawal process.

About two years later I relapsed. I had persecutory delusions and telepathy. I also felt burning pains on my legs and hips. But I did not know these were symptoms for schizophrinia. I had no educations on Schizophrenia. The only thing I knew about Sz was hearing voices. I had no voices. But I still went to Pdocs. It was around year 2008. This time I started to take Risperidol and Seroquel. This combo of meds gave me dreaful depression, blurry eyes and difficulty speaking. I hated Risperidol so much and always wanted to get rid of it. I did not stop it until I had the second relapse while still on Risperidol and Seroquel. None of the Pdocs I saw had told me the fact that most Sz people need to take madication lifelong. So I drew a conclusion I was not Schizophrenic because 1) I had never heard voices; 2)The drugs for Sz failed to work on me which means I do not need them. I stopped taking APs in 2011.

Between 2011 and 2013 I was free of medications yet suffered from tremendous positive symptoms of Sz: delusions, intrusive thoughts, voices and continual insomnia. I thought I was going to die. I locked the door of my house and refused to let my husband in thinking he was a spy. In 2013 My husband sent me to hopital where I started to take APs again. After one month I was released from the hospital and came home. I was curious about Sz and searched on Google, then I saw the links to the Old Sz forum. It was on the old forum I found huge information about the symtoms of Sz and the medications of SZ. No sooner had I joined the old forum than I saw a post about tactile hallucinations. I realized the burning pains I got on my legs and hips were one of the hallucinations. So after 10 years of suspecting and rejecting Aps I finally accepted that I do have this horrible mental illness and need to take Aps lifelong.

Above is my story about how to be med compliant. It’s a long journey. I am wondering what’s yours story?

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I started hearing voices and thought I was telepathically communicating with a certain actress when I was 30 (12 years ago). This went on until it started affecting my behavior because the voice told me it would meet up with me at certain places and I’d go there and wait. I eventually crashed my truck on a highway while being under the assault of voices, and spent 5 months in jail (all solitary confinement) as a result of causing shenanigans while homeless.

When I got out I got on the right meds and began to recover. By age 36 I was doing much better and had landed on the old forum. By 38ish nobody could tell I was sick anymore unless they knew my history. It was a fantastic recovery. I still hear voices but I realize they are internal like having a dream but while awake. I don’t treat them like real people. I’m also on Olanzapine which eliminates delusions and 95% of my paranoia. I started on 20mg but had bad akathisia at that dose so i eventually went down bit by bit until I landed on 5mg daily.

Today I’m doing MUUUCH better. I still haven’t been able to replace my vehicle, but I’m stable enough for my family to willingly take me in and offer me affordable rent. I stay out of their hair and don’t cause trouble anymore. I even got a part time job awhile back. I haven’t had many hours lately but for like 3 years I was making supplemental income as an English tutor. I qualified for disability, medicare, and medicaid so I’m doing alright.

I’m kind of surprised you had a doctor that said you were cured. It’s common knowledge amongst pretty much all doctors I’ve met in the USA that schizophrenia/schizoaffective are permanent disorders that you need meds for for the rest of your life.

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I had the same thing as part of mine. A certain singer and id go to where I was told to meet up too.

I got sick start 2014 and start 2016 I asked for meds because the voices really scared me that they were gonna kill me and I would try anything to know I was gonna live

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I was probably in a prodromal phase starting at age 17 and I started having problems at age 19. Some bad acid trips probably triggered my schizophrenia. When I was 19 my parents arranged for me to start seeing a therapist, I saw her for about 3 or 4 months then one day the head psychiatrist at the clinic held a meeting between my therapist, me, my parents and him. We talked for 20 minutes then he told my parents I needed to go in the psyche ward immediately.

So my parents drove me a hundred miles to a Kaiser facility up north of San Francisco and checked me in. I had my birthday in there. I was there a few days and they tried to get me to take medication but I refused. They blackmailed me and told me if I didn’t start taking it they would kick me out of the hospital so I took it. You hear occasionally that people claim the medication made them psychotic, well that’s what I’m claiming here. I wasn’t doing good when I got in but I wasn’t suffering but when they put me on medication it messed up my head and suddenly I was experiencing mental anguish. After a week there my parents came to get me and they arranged to have me move into a group home for schizophrenics called Soteria House.

It was an experimental house who the founders main tenet was that they didn’t believe in medication. They thought by putting schizophrenics in this two story house in the middle of the community and staffing it with young men and women that they could get better results than being hospitalized and taking meds. The counselors had no psychiatric experience they were hired for being friendly, understanding, open minded and empathetic and they mingled with the 6 residents and listened to what we had to say and didn’t judge or call us crazy or treat anyone like they were crazy.

I guess it helped some people, I lived there a year and a half and didn’t help me at all, I was extremely psychotic and with no medication I got progressively worse. Those were some bad times but I was young and it was interesting living there, the counselors were cool and there were other young people there who I became friendly with. I had been there about a month and a half and my parents arranged for me to see a family friend who was a psychiatrist. At the time, even though I was living in a house for schizophrenics I thought nothing was wrong with me, I honestly thought the only thing wrong with me was I was a genius and that I was perfect.

When we went to see the psychiatrist, first both my parents and me met with him all together, then he excused my parents and just talked to me. I told him nothing was wrong with me, that it was my parents who had all the problems. I met with him twice and he diagnosed me with schizophrenia. I was in denial and didn’t believe him or accept that but it took only about another month for me to realize I was sick and he was right.

So I lived there for more than another year and I got kicked out over a misunderstanding and moved back into my parents apartment, I lasted a week there before I had to go back in a different psyche ward. I stayed there two weeks and I forget if they gave me meds but from there I moved into a long term hospital.

I was a good patient, I didn’t cause any trouble and I was agreeable and I went along with whatever my parents thought was best for me so I wasn’t fighting my treatment, I was very cooperative. In the long term hospital they put me on prolixen. Once in the morning and once at night I took my medication. Incidentally, they put me on a massive dose of prolixen, they don’t even give anyone such a large dose of that medication anymore, I was on 60 mg. I’ve been on medication ever since, and I got out of that hospital after 8 months and I started doing better and I got stable and that’s where my recovery began.

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Around 17 years old I had psychosis that didn’t really affect my behavior. I worried I had schizophrenia after that. At 19 around the time of my 20th birthday I was hospitalized for psychosis. I was diagnosed bi-polar. Around 31 I was diagnosed sz. I’m 42 now. I guess I realized I had sz at 17, but didn’t really care even though at first I was kinda worried.

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My sza started at age 15 with voices and delusions but I wasn’t sure what was going on. Only when I got to the age of 18 and had a breakdown in December 2002. In hospital for the first time the following month, they said I either have bipolar (as my moods were intense) or sza. After that they changed diagnosis to sz.

In 2007 I stopped all meds with help of dr and for five years the only symptoms I noticed were interpreted by me as being due to spiritual or religious reasons (occasional voices, bizarre rituals and depression) but I coped off my meds.

In 2012 I relapsed and my sza returned but I didn’t believe I was still schizo like in past. I thought I was just depressed due to stress. But then my psychosis slowly came back. I resumed meds

In 2013 I went to hospital again for first time in eight years. Diagnosis was sz but I didn’t feel like it fit me properly due to my mood problems.

In 2018 I received sza diagnosis which fit me better. Since then it hasn’t changed.

I go through periods when I accept I have sza but other times I lose insight and don’t believe I’m ill.

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I’m not going to go into a long story about it. (Partially because its hard for me to remember all the dates and details at this point), but it took me a couple to a few years to finally completely accept it.

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I was schizotypal all my life.

Later, at age 27, it became schizo.

It started with uncommon beliefs and visual hallucinations and severe depression. Then, voices commanding me to die, appeared.

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I doubt it everyday.

I had two episodes in 16 years. I don’t think I have sz and I think even the docs are confused now.

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In my situation it has been very confusing.

It always vacillated between Bipolar and SZA.

All of the doctors I dealt with were confused

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I 'm very sorry to see what kind of truble the voices had caused to you.

Yes, I’m proud of you for having coped so well with Sz symptoms, medication, life and even a job !

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This attitude towards medical treatments is commonplace and understandable.

So it didn’t take long for you to accept you truly has Sz and are in need of APs.

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I accepted my schizophrenia but the group home I had to live in at the time didn’t believe in medication so I wasn’t put on medication until a year later when I went in the long term hospital.

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You were wise to seek medical help soon after the emergence of Sz symptoms.

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May I ask you between the age of 19 and 31 had you always been on AP?

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No. They tried putting me on meds but I didn’t comply. Those were rough years for me. I was in good physical health, fit, but quite unstable in maintaining healthy habits, social relationships, employment and studying.

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I’m surprised it took you 16 years to get a confirmed diagnosis of Sza. Hope these Pdocs are giving you the right meds for your symptoms.

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I think a couple to a few years for confirming and accepting this mental disease are needed because it’s hard for us to get enough information on Sz or Bipolar especially when there was no Sz forums.

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I know the positive symptoms you had and have are very rough and hard to handle. Stay strong my brother.

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I remember you are taking Abilify and are on a low dose, which I think is relatively lucky if compared to the majority of members on this forum. I hope your Pdocs will work out a precise diagnosis for you in the near future.

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