Family and Caregiver Schizophrenia Discussion Forum

How long does “insidious onset” continue?

From my reading here, it seems like many family members are functioning normally and then have a fairly sudden onset of psychosis. But then also there are pretty many who go slowly downhill over years.
My son seems to have been all right through most of elementary school, but really stopped being able to function between seventh and ninth grades. Now that he is homeschooling and taking strong AP’s, he is pretty stable.

What I wonder is- for how many years will the disease keep getting worse? I’m hoping maybe this will be as bad as it gets. He still seems to be very afraid a lot of the time.

Of course every individual is different, but I was wondering if you have seen things level off after a few years.

Thank you to all the people here who make this a less lonely experience.

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My son started around same age. He is now 28, has had many hospitalizations. His cognitive , decision making is just not there any more. So sad to watch. He goes on and off medications
I don’t think there has been studies on long term effects of these medications

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You may want to read into the long term affects of most antipsychotic medications. You can google it. Forewarned, it can be pretty disheartening and scary the known side effects. It may also be worth researching the difference between first generation antipsychotic medications and second generation antipsychotic meds.
Finding what works for one person and at what dosage can take a long time. Years even… I’m sorry to hear your son suffers but glad to hear that there has been some stabilization. Keep coming, this is a great place for sharing information, tips, support, occasional therapeutic humor, venting… really good group you’ll find here…

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Hi Hummingbird,

While terms can vary, basically there are 3 stages to schizophrenia. Prodromal, Active and Residual.

Prodromal is a period of decreased function that frequently proceeds the obvious psychotic symptoms of the Active stage. The following numbers are about the Residual stage. I have read about people who said they felt as though a cloud lifted from their brain when they entered the residual stage. Most people will continue to have some symptoms, most have them to a lesser degree.

I’ve copied this from somewhere a couple of years ago, “most” other research about how long schizophrenia lasts has found these numbers to be pretty consistent about recovery over years.


When people with scz were discharged from the back wards of a Vermont mental hospital they were tracked at 10 and 30 years after release. These are similar to numbers we have seen before.

10 years

10% are dead, mostly suicide
15% hospitalized
25% improved with extensive supports
25% much improved
25% fully recovered

30 years after release:

15% dead, mostly suicide
10% hospitalized unimproved
15% improved but require extensive support network
35% much improved relatively independent
25% completely recovered


It has been suggested that some forms of schizophrenia have a 25 year span. My son’s doctor was asked, when do we start counting the 25 years? He smiled and shrugged - things can vary a good deal as the numbers tell you.

You particularly mentioned “insidious onset”. My son suffers from the insidious onset version of scz. The psychotic symptoms came on gradually for him. He had a long prodromal stage, his ability to function decreased very, very slowly. He graduated from college and began working. We know psychosis was present at age 27. His psychotic periods began lasting longer and occurring more frequently. Instead of having 2 bad days a month, now, 11 years later he has a couple of good days a month. He became fully disabled and unable to support himself any longer at age 31. He is pretty resilient and was able to work that long by creating his own accommodations, such as working night shifts when few people were around.

I should also point out that my son is totally unmedicated for his scz and basically always has been. He tried meds twice and didn’t last a week either time.

According to Dr Torrey’s book, insidious is a bad marker for future recovery. He is also quick to say that he has seen enough people with bad markers recover that it should make anyone humble about making predictions about outcomes for our family members.

Take care, I am so glad your son is pretty stable and willingly taking strong APs.

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Thank you all for the replies. He had some odd behaviors all along, but never mention hearing things until he was 11 or so. And even then, he could go to school, and teachers had no idea what I was worried about. So he is 5 years into it, or so.

At this point I am so grateful for anytime that he seems to feel reasonably good. He is getting very interested in using apps to create music, which I think is really good for him. He will only get together with one loyal friend, and willingly goes to a support group. This is so much better than last year, when he was in and out of the hospital.

Best wishes to each of you.

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I hope he’s gonna be the 25% that recovers.

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Thank you! I would be happy for the top 50% even!

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Me too, the top 50% would be great!

Just as an update, we went Roller Skating today and had such a good time. Things like that are just pure joy to me.

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My son was diagnosed at 24-25 had few symptoms prior. He completed college and had several jobs. When he is medicated he is able to live independently with family support and contact. It takes forever and patience to find the right meds. He has been through about 4 newer gen and now has settled on haldol- . He has agreed to the shot and I can’t wait. I am hoping he will fall into the 60 percent… his case is complicated by his alcoholism… I prey for all of them and us as folks who love them.

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That is good news that your son is doing fairly well. My son continues to do pretty well with homeschooling and his support group. We also switched to a practice n Manhattan yhat has been really helpful.

His low point was when I put him in a county therapeutic program which didn’t seem to know anything about teens with psychosis. Since leaving there, things have really setled down.

He is a few weeks into taking Clozapine, and I am a teeny bit optimistic. None of this is for the faint of heart!

That is good news that your son is doing well. It is such a struggle! My son continues to do pretty well with homeschooling and his support group. We also switched to a practice in Manhattan that has been really helpful.

His low point was when I put him in a county therapeutic program which didn’t seem to know anything about teens with psychosis. Since leaving there, things have really setled down.

He is a few weeks into taking Clozapine, and I am a teeny bit optimistic. None of this is for the faint of heart!

Sorry to hear about your son, in the long term I don’t think you should put your trust is psychiatric services. The medication may be of help but that’s because they are drugging him, not because they are treating an underlying illness. Its the same logic as lobotomy. Before the treatment patients were highly agitated suffering from crippling mental illness however after the lobotomy they were quiet, uncomplaining and showed little concern for their troubles. Patients wrote letters to Walter Freeman thanking him.

I’ve also had a history of severe mental illness but managed to get better and no longer take any medication, work part time 2 jobs and actually enjoy my life with my girlfriend and look forward to the future. If your son would like some ideas on how to get better here’s a link to my short essay

Link: [http://media.yoism.org.s3.amazonaws.com/CakeTheory.pdf ]

Also I have a YouTube Channel where I air my views. Good Luck>

.https://www.youtube.com/user/caketheory

This is great info. Thanks for sharing…

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I really appreciate you sharing your experiences on the forum. They always make me stop and think about how difficult our position can be as caregivers. Recently, a book I was reading said “when you can’t decide between two choices, it probably means that neither choice is a good one”. I wish they had told me that back in Family to Family, I spent a lot of time agonizing while I tried to figure out what was the best choice going forward for my son. My son’s way has turned out to be an okay way for him.

It is encouraging to hear about people who do well without medication! That would be a wonderful outcome.

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