I’m so sorry that he feels this miserable. You are doing all you can. Keep asking if there is anything you can do to help. He is so fortunate to have you and it is wonderful that he communicates his feeling to you so well. Things will get better.
I agree they should have given that shot sooner. Hopefully, next time they will. Hang in there and I hope you are getting sunshine today.
It’s sunny but cold here - after a record-warm February.
He was willing to take his Invega this morning plus asked for a Zyprexa, so I gave it to him. Nothing else is working, so make it will let him get some rest.
He’s nodding off watching TV and I’m torn between trying to keep him up so I can get some sleep tonight or just letting him sleep. I’m sure I’ll just let him sleep then deal with it later.
To be honest, I think the hospital has been good and bad. It keeps him from drinking, but puts him in contact with so many people who have the same problem and have had it longer, so now I get to hear how he has a “right” to drink if he wants, etc.
Right now, he can’t see that it makes him worse and he doesn’t get violent, but gets really agitated when he can’t have anything. At this point, I’m trying to keep him to a beer or two a day and hope for the best. The few bottles of liquor we had in the house are now so watered down, they only give you the illusion that you’re having a drink so we’re good there. I had nearly a full pint of rum in the kitchen cabinet left over from some Christmas cooking he found yesterday, so that’s all gone.
If I take everything out the house, he’ll be asking constantly to go get more so I’m picking the lesser of multiple evils. If this doesn’t calm down, he might have to start talking to them about other housing options because I would only end up enabling this, and that wouldn’t help him at all.
I can only hope that we can get some combination that works, and that he’ll take, so that he can get his head back to the point where he only has a random drink now & then instead of craving alcohol every single day. I don’t want to get into it with him, but I can only guess he thinks it calms his symptoms in some way.
I have two thoughts that relate. When my son left for a week his goal was to not eat or sleep until he died. Because that’s how jesus would sacrifice himself. With all the stories I have read there could be a correlation here… and @slw, the doctors told my son that smoking pot possibly opened the door for schizophrenia. The dr. Said lots of people can smoke it and be fine, if you smoke it you will end up naked in the woods of Montana, using your blood to write people letters , while you burn your tent down with yourself in it. Which is what he had done at the coast 3 weeks earlier. Thing is, he’s been home now 1.5 months and he’s smoking pot a lot again. He says the seraquel makes him feel nothing and the pot makes him feel good. I know when he’s high because he had a personality again. He laughs And jokes. But I know it’s damaging him further. And it’s also illegal. I have also found half gallons of gin in his room that he had drank within 3 or 4 days. I sometimes think his time here is limited. I hope things are mellowing out for you. Hugs.
I’m pretty sure my son got sick the first time before he had smoked anything - he was 15, it was sudden, and he tested clean for drugs at the hospital. Before then, we had caught him drinking several times because he was so anxious & scared he wanted to just make it stop.
That being said, pot is not good for him. I’ve seen him sneak a joint during a break and have his paranoia go through the roof. He realizes it, and it’s the one thing he’ll either leave alone or be very careful with.
For your son, if you guys live where it’s illegal, the problem is that he doesn’t know what he’s getting. And even if he did, he probably doesn’t have any choice. I don’t think any cannabis is good for someone with psychosis, but some types are way worse than others. He could smoke something today & be OK, then smoke the same amount of something else tomorrow & end up back naked in a tent in Montana. I’m sure I don’t have to tell you that though.
My son said the same thing about Zyprexa - that he felt nothing on it. The Invega they have him on now did great at first, but they can’t seem to get enough of it into him in the shot form, and it cuts out on him at about 19/20 days instead of 28. I haven’t given up on it because after the first two weeks of his initial injects, we had two wonderful weeks where he was almost symptom free and was very positive about his future.
I was hoping we could get his 156 mg shot tomorrow & continue the 12 mg/day oral through the next 4 weeks, then bump him up to the max 234 mg with 6 mg oral, then take him down to the 234 mg shot plus 3 mg oral if he does fine, then cut out the oral.
That was the plan I was going to propose to the doctor, but I got a lecture this afternoon about how he was ashamed to be himself because I keep feeding him pills to turn him into someone else, and he can’t be someone else - that this is as good as it gets. All while he still has no insight today & tells me people can see what he’s seeing through his eyes when they call him on the phone.
So, I don’t know if that plan is sustainable. It’s literally been only 4 days of oral meds, one of which he refused them, and I’m getting pushback from him. I really, really need them to have someone talk to him every few days about how important the meds are and what they do for him, but he’s in a transition stage - his old case manager in a different area has too many patients to be able to give him that kind of attention, and he has no trust built up with the new team.
Hang in there. You are such a strong woman to be dealing with all this frustration. The small amount of time I have been in this new reality I realized real fast how screwed up the system is. The medicines are trial and error, hit and miss. The support system that seems to work the best is from strangers across the U.S. who understand and are willing to help. My son is out of money now so my thoughts are his pot days will end soon. I am keeping fingers crossed that it doesn’t give him an excuse to give up. I wish you luck with your son. Hugs.
We’ve been doing this for 12 years, but the lack of insight and meds not working is new for us - just in the past year, year & a half.
I think most doctors really care & really want to help, but they just don’t know enough about the brain and mental illness yet. That day will come - hopefully sooner rather than later.
And, there are so many reasons that people develop psychosis besides genetics or drugs.
I’ve been reading more about sleep deprivation and how they think sleep disorders may not only be a symptom of severe mental illness, but could be a trigger, just like drugs can be a trigger. That could have been my son’s trigger. He’s never been on a 24-hour day. His is more like 36 hours. Even as an infant, the chart said sleep 16 hours, awake for 8 - and he had that exactly backwards.
I do know that he dreams, because he talks about the bad ones, so he must be getting REM cycles. And, I see him sleep so deeply that I watch to make sure he’s breathing, so he must be getting that too. But, he also talks about lucid dreaming (I’ve done that) and sleep paralysis (never done that), so there’s a lot going on, and I don’t know if there are any sleep specialists or sleep studies that target psychosis - it all seems to be about sleep apnea & stuff like that.
I remember early on reading that 3/4 days of completely no sleep can make just about anyone have full-blown schizophrenic symptoms according to military studies, and that’s how much he needs to go from stable to completely off the edge when he’s doing well. Every time he’s went to the hospital this year he’s told them he was up for 5 days.
Wow. My heart goes out to you. I have been spending a lot of time learning as much as I can also. I can’t imagine living with that little amount of sleep. For now the medicine knocks my son out at night. I am kind of comforted by that. But I still hear every movement during the night. I know I can’t put complete confidence in the meds. If I have learned anything here is that meds wear off, or they become immune. You are very knowledgeable , thank you for your insights. I really hope the best for you and your son. 
Zyprexa was the first anti-psychotic that worked for my son, and it worked at varying dosages for about 9 years.
I guess I can’t complain too much.
He also had insight during that time, so it may be that my son changed more than the med stopped working.
I’m far from as knowledgeable as I would like to be, but I’ve spent all these years trying to come up with my own theories, especially since he’s only recently gotten the SZ diagnosis.
Before that, it was depression and general anxiety, psychotic depression, psychosis NOS, major mood disorders, etc. So, I’d read everything I could get my hands on trying to figure out if it was “just” the world’s worst case of anxiety or something more severe like bipolar or schizophrenia.
I figured out a long time ago that the labels don’t matter anyway so I just stick with the fact that he has psychosis. Exactly why he has psychosis is up for debate.
My son was hospitalized three times in 1.5 months. I was told he was major depressive disorder with psychotic episodes, substance induced psychosis, and schizophrenia. I don’t know if I will ever know the why or the how. My son is the first in the family to ever have this. I’m talking 6 and 7 generations. I just know for some reason he’s got it. And we will all deal with it. I didn’t realize that it scared my younger son to death. He’s 17, things felt a little awkward, but they are getting better. All I know is my son has hallucinations and delusions. The voice in his head is his own, but he can’t tell reality from delusions.
Don’t know if bad dreams are a drug side effect as we have not tried Invega. However my son is PS. During his last break, he did not sleep or eat for a couple of days. Unfortunately caregivers can’t mirror that behavior but we did try to stagger who would stay up with him. When he did sleep his dreams were terrifying which of course reinforced the desire to stay awake. Their terrifying dreams are very real to them. Rather than trying to get him to see reality v dreams we let him talk about the dreams until he talked himself out. But it is draining and I feel for you. I really wish there was a course of treatment that would just work, but it is a never ending, exhausting journey for both my son and our family. Small comfort is we at least know we are not alone. Hang in there.
I’m glad I came across this thread. It mirrors many of the experiences I have gone through with two of my adult children, both 32. My journey began in 2003 with twins, both girls. The time period for each initial breakdown was different, but both equally devastating. The details will never fade. Schizophrenia runs in my family, my grandmother and mother, and now to my girls. Never would I have thought I would be going through this, but the Lord has carried us thus far and continues now. This is my source of strength in this every day. The age of their diagnosis is a common one that I was unaware of at the time, late teens and early twenties and they had entered college, one working on her masters. One is highly functional, is able to drive but only able to work for us in helping to manage our rental property. She won’t take medication unless I give it to her, though, and doesn’t believe anything is wrong. Her sister is moderately functional, but surprisingly seems to have more insight. Her breakdown was much more severe and she takes a hefty cocktail of medication that does not totally eliminate psychosis, but she is able to cook, care for herself, shop and enjoy life as much as she can. What struck a chord with me was the factor of insomnia, both in being a trigger and a sign that something is about to happen. I always watch for this. There have been yearly episodes since the first breakdown, but none have required hospitalization. We have found a short course of haldol very effective when this happens. What I have observed though, is the medication, like many medications, has lost the punch it had at the beginning, and they are currently at the max of abilify you can take. I suspect this might be a problem that needs to be studied by medical professionals. I can reiterate the experience of some here in dealing with the system and doctors. We were pretty much shut out. Not much, if any helpful information. Because the medications began to become less effective, I have tried complementary supplements. I have read how some things help some and not others and that’s been my experience too. I try to limit coffee and we don’t drink alcohol. I’ve seen the most benefit from high quality fish oil, NAC, magnesium and glycine. Glycine, in particular, is helping the most, at least for now. It helps them sleep well and they seem to have a positive outlook. I tried sarcosine, but didn’t see the benefits that some have gotten. Most of all though, love. Having and maintaining that connection every day. God bless everyone!
I’d like to know what brands of fish oil everyone is using, because I read that you want to go with one that has the highest percentage of EPA & DHA (are those the right letters) to total oils.
I’m using the highest percentage one that GNC sells right now, but I know there’s probably better things out there. However, I go look, then get skeptical about the claims.
My son asked for glycine once - I’ll have to get him a new bottle.
RIght now, I’m just trying to get his meds into him, so I’ve taken a break from pushing the supplements, but I do think they can help.
We’ve switched out our regular coffee for decaff because he drinks so much.
The nurse at the clinic told us to try Nordic Naturals fish oil.
I have used Nordic Naturals and it is very good. I’m using this brand now.
I take it too, and can tell if I haven’t taken it for awhile. This brand also makes a good magnesium supplement.
I’m going to look into both of those.
Does anyone use one that has Co-Q10 in it too? My son liked the one from GNC that combined them, but they’ve discontinued it.
I’ve heard of Nordic Naturals, but the reason I’m skeptical is that I have a side business where I write for online content for companies, so I know what a lot of them will do for sales. So, I take everything I hear with a grain of salt, unless it’s a recommendation from people I feel like I know - like you guys.
Ambient can cause psychosis for sure. I’ve seen it. It’s a good sleep aid as long as it’s done properly. I can’t imagine giving ambien to an already psychotic individual!
My wife goes days without sleeping
That isn’t good for anyone’s mental health and it usually a sign of remission in schizophrenia.
My son’s doc suggested Benadryl for my son to help him sleep though some people here say it does nothing for their loved ones. It’s over the counter and worth a try. My husband and I take Melatonin at night and only 5 mg.