Hello @Hopeful_in_Tx,
Sounds like a really hard time for you and your family. There are alot of us here on the site, many have been in your shoes.
It’s good that you have professionals looking after your son.
praying for you and your family.
AnnieNorCal
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I know this isn’t probably the thread to put this. But… He was shaking and shivering on Tuesday when we saw him and he’d only had haldol and Benadryl so far. When we talked to him over the phone yesterday he said something about he was shaking.
They have him on geodon 20mg and cogentin 1mg (I don’t know if that’s once a day or more often than that) now.
And to me… Well… that place feels like they keep it cold. He seems more coherent and closer to himself maybe but… Well… I’m worried about him.
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I would think it is like all memories…some are more vivid than others. My son remembers the first time he went days without sleeping. That was over 15 years ago and some memories stand out for me; others for him. And he remembers the last one that landed him in the hospital. He will talk about some of them, others he won’t.
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Years ago, the forums were integrated but then separated. I understand why the change happened and like the setup now, but there is nothing like hearing from the folks with an actual diagnosis. I popped over to the dx’d side one time and read a thread where someone posted something similar to ‘have you been over to the Family side? It’s so depressing!’ - seriously made me laugh.
Love your avatar 
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When you saw him, is he allowed to wear clothing that would keep him warm if the temperature is part of the issue? Thinking about your son and your family and hoping he continues to be more coherent.
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Hello Shmookitty,
Thank you for posting, good to hear from you
AnnieNorCal
@Holly67 I noticed something to that effect as well when looking through their forum. I am trying to believe that my son likes his life. Although I know he doesn’t like being on the shot. But he is working away most of his days and resting in between. And eating - a lot.
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He has two long sleeved shirts that have hoods and don’t have strings of any kind. I’m going to take those up with us tomorrow when we have the meeting with the case manager and see if they’ll let him wear those.
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Its hard to know what they are really thinking, isn’t it? I overthink way too much and my son doesn’t like it when he sees me doing it. Nice to hear yours is out there working, resting and has a good appetite! Very encouraging.
The folks on he dx side obviously have insight. Maybe someday…
I think managing the disorder gets easier for DX’d over time. Naturally, everyone becomes less irritable, more even tempered and has a better focus on what matters to them as they age.
I think everyone has the ability to self reflect on their own thoughts and actions, especially in hindsight. But just like anyone, DX’d can choose not to use this ability.
What mattered most to me when my brother was really struggling badly was to help encourage him not to close doors on himself by being agressive, using drugs, by shutting away friends and family, and by going to jail. He did at least recognize that he didn’t want to be in jail most of the time.
I think now that he’s had a few years of practice, he’s better at evaluating his words, his actions, and his thoughts than he used to be. The last time he had an episode, he clearly was aware that he was uncomfortable and insecure. He remembers feeling like he wasn’t himself and that the world was a different place for him. But he especially remembers not liking experincing an episode at all.
I think all of this was born from his practicing evaluating his thoughts and his actions. While he conducted himself very reasonably during his last episode, it was obvious that he was fighting the compulsion not to. In hindsight, we both attribute much of his ability to observe and contemplate the situation as it unfolded to his more careful adherence to his prescriptions.
I am certain that he is much more careful about taking medication as prescribed since.
So, is it possible that a DX’d person doesn’t remember?
Yeah, I think so.
In addition to typically fuzzy memory and confusion of sequence of events, choosing not to self evaluate can be a receipe for comparmentalizing and pushing aside those memories before they are fully remembered.
Is it possible to remember episodes and use that memory as reason to adhere to treatment?
Also yes. I still occasionally talk to my brother about it, but we try to stay focused on the present and the future.
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Two years ago our son experienced his first psychotic episode as a freshmen in college. He was on antipsychotic medications for 4 months and when he lowered the dose he actually seemed to improve. He was able to return to college for one semester however he had started smoking pot again and his symptoms began to reappear. After stopping the pot he improved again and took a semester off from school and worked full time. He began smoking pot again and even started using the wax form of THC Dabbing I believe and his symptoms returned with a vengeance. He tried returning to college this fall and has had to come back home for help. He is back on 10 mg of Zypraxa a day now for 4 weeks and his symptoms are improving. All illegal substance have ceased though. We have him seeing a therapist and a psychiatrist for medications. He begins substance abuse treatment once his symptoms of psychosis are well under control.
He’s not been diagnosed yet although we feel it’s possible his use of THC and experimentation with LSD has set this illness into motion.
There is a lot of long term research out there on the poor outcome for people who use antipsychotics long term. Google mental health and recovery from psychosis in counties like Finland and Sweden. Europeans approach the treatment so differently than western psychology.
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We are already looking at alternatives. though finances are a consideration. I’m self employed, husband went back to school for a business degree. (And I am very proud of him for doing that 
)
I’m going to be looking for work and also working on my WAHM business (work at home mom) to get more $$ coming in from that.
I’m looking at essential oils, diet, homeopathy, and other things to if nothing else maybe lower the dosage. Though… I think maybe the 20mg of geodon is at the low end? I don’t know if they think it will need to be increased or not.
He already seems more lucid and like he’s trying to decipher what was delusions to what was/is reality.
Prayers appreciated for us to make good, wise decisions and for his doctors too.
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My son apparently has read a lot about the long term effects of anti-psych meds as @swillis mentioned and calls them experiments. He chooses for forgo medication. And for him that includes alternatives also because they are the basis of modern day pharma synthesized in labs for stronger effects. He is pretty much anti meds–even OTC. He knows sobriety is key too. He stays away from street drugs but not beer. He knows that needs to be done and it is a goal.
CBT has helped him to deal with life and the everyday delusions or auditory hallucinations. That probably would not have worked at the onset, but we are 15+years into this journey. We have changed too how we interact with him. Sometimes he says things that are not true, but if we ignore that and we continue, we get to the real heart of what he is thinking. Sometimes it is far deeper than we would have imagined. He is a talented builder but cannot work consistently at anything. Only recently has he become ok with that knowledge. Sure I wish there was a med that worked for him. Maybe someday. Until then well… I miss the boy I had but have adjusted to the man he is. Life is odd, but most days are ok. And OK is good.
Everything you mention here has made quite the difference for us with our son. I also believe CBT probably would not have worked when he was younger. I think he had to get to the point where he was ready to try CBT. I suspect his original doctor must have mentioned it at some point. Jeb is always listening, it can take a long time for him to decide to try something. He always did take a long time to make decisions, even before his illness. We used to point out that he rarely made a bad decision, his brother said that was because Jeb took such a long time making decisions and scoffed “who has that kind of time”. Our family members with brain disorders probably need that kind of time.
Has anyone read “Rethinking the Madness” by Paris Williams PhD? It’s very interesting and has given us a lot to think about.
Can you tell us a little more about the book?
It’s a book based upon longitudinal research regarding people recovering from psychosis with and without medication. There are a lot of excellent interviews from people who experienced psychosis. The book talks about how psychosis is treated in other areas of the world - like Finland and villages in Africa. It’s very different that western psychiatry! In some cultures hearing voices and seeing things is seen as a special gift. It explores how depending on what culture you may live in can have an effect on your recovery.
Another excellent resource is “Mad in America”. This forum has excellent insight into mental health. The contributors are therapists psychologist and physicians social workers etc who approach mental health in amazing ways. You can subscribe to their emails. It offers online learning and educational opportunities as well. Mad in America is primarily opposed to western psychology and how mental illness and psychosis are treated and viewed. I have gained a lot of hope and knowledge from both of the above resources.
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@swillis I’m going to check those out! Thanks!