Thank you for this post. It will be quite an advance if it can be predicted by doctors from the outset of this illness that a person won’t respond to most anti-psychotics except for clozapine. My daughter went through 5 different anti-psychotics before we found which one worked. She was never put on clozapine, and her psychosis lasted for over 3 years before she was put on the Haldol Dec shot which worked for her. That medicine calmed her hallucinations and delusions, little by little with each passing month, to a manageable point. But her recovery back to a normal life has taken years while on Haldol. Clozapine wasn’t even mentioned by her doctors over that 6 year period. Yet, per this new MRI and study, Clozapine can be the only medicine which works on certain non-responders to anti-psychotics, It would be great to have a test available to the public that predicted non-response at the start of attempted treatments.
In getting to know others fighting this battle with schizophreania, it turns out that clozapine was never offered to them either. My heart aches for those trying to care for someone with this illness. My family was very lucky that we stumbled on the medicine that works, and is still working. In the beginning, we tried lots of non-medical solutions like vitamins, homeopathics, change of environment, sleeping pills, etc, with no benefit. Then forced medicines which didn’t change things either. Finally, Haldoperidol injections, and my daughter got better and could participate in “regular” life again.
Part of her recovery involved a doctor who read her MRI in 2018 after a fall she had while psychotic, and said she had a missing part of her brain (missing white matter, called “partial agenesis of the corpus collossum”).
This new MRI prediction tool, neuromelanin-sensitive MRI, or NM-MRI for short, may save years of psychosis for people who won’t respond to anything except for clozapine. Doctors could put a patient on it much earlier. I hope this special MRI becomes available soon outside of the study.
I typically use “scholar.google.com” to research. Usually returns published studies from various years. There’s lots on “partial agenesis of the corpus collossum”, but when I add “& schizophrenia” nothing comes up which leads me to believe the partial agenesis of the corpus collossum is probably not the cause of schizophrenia, but who am I? I didn’t find anything with other searches either.
So difficult to hear your story. The meds are difficult. We were on 5 meds initially and as soon as the baker act released my wife we started to pare down. She’s almost off the last one now. I believe it was a wrong diagnosis, more like a childhood PTSD thing.
If you have access to the DSM-5, it’s kind of an eye opener in that the categories of mental issues seem to be all spectrum now. It’s hard to have faith in Psychiatry with so much we don’t understand and with all the changes day to day. I was lucky to find the DSM-5 at the thrift store.
I wish you the best in future. Check out google scholar.
I found only one scientific study that included both agenesis and schizophrenia. I wouldn’t know how to find it again.
I think causes for any illness are hard to determine. And yes, that book is daunting to me, I couldn’t make myself read it.
Glad your wife is coming off the medicines OK. I am too afraid to mess with my daughter’s meds, and her psychiatrist is too because she says my daughter is one of her “best” patients, i.e. recoveries.
This is off the subject but ----
I found it very interesting that my son’s brain mets were similar to his schizophrenia symptoms (from my view). The inpatient hospice team had a good deal of experience with brain metastasis - brain mets and the caregiver difficulties they cause, along with bone mets and the severe pain needing high levels of medicating- are the most common reason hospice patients end up in inpatient hospice care.
Like Mike’s schizophrenia symptoms, the brain mets would flare up and recede. Initially when his brain mets were discovered, he was treated for inflammation which was from the brain mets pressuring his brain. The inflammation was treated and his ability to talk and read returned.
He had whole brain and focused radiation, when the brain mets rebounded less than 2 months later, he had frightening hallucinations and severe paranoia alternating with calmer moments. The hospice nurses said both the hallucinations and the paranoia were typical with brain mets. I do find it interesting that I think of paranoia as a symptom, but isn’t it possibly more of a side effect from the auditory and visual hallucination symptoms?
Is it possible that schizophrenia is a brain inflammation disorder that through its constant recurrence ends up distorting reality permanently?
From my experience, I’d generally intuited that paranoias and delusions were likely a reaction to auditory, visual and “thought” hallucinations similar to how “well” people construct narratives from dream stimulus. It’s been theorized that SZ perhaps had it’s origins in a breakdown in myelin protection of nerve bundles during brain development, but I suppose inflammation could have similar results and such mechanisms could explain similar experiences in Parkinsonism, dementia and related neurological conditions.
I follow artificial intelligence developments, and I find it fascinating that large language models like ChatGPT “hallucinate” or fabricate fact patterns similar to conspiracy theories and require “alignment” to try to diminish them. I follow a developer of a fairly advanced chatbot who’s more open about his development process than most, and he describes the way he moderates this as “medicating” the chatbot for trade offs between it being creative and entertaining or engaging, and coherent, sane and civil. He calls it his “schizo slider” [sic]
My husband commented that he hoped the brain research world was examining the brain metastasis issues. Cancer produces a large supply of potential brain research donors.
Thanks for answering MB, I’m still trying to learn.