Thank you. I have often thought that my son would rather live in this other world also. That’s hard to understand. I also know that I added to his stress in junior year because I knew how smart he was and wanted him to go to college. Now that he is getting better, we need to help him add more in his life to stay busy and better his life. In the end it will all be up to them, no matter how much we plot and plan.
My husband is not super small,he’s almost 6 feet and 175, but there are people much bigger than him in the hospital. He is like your son in that being admitted is terrifying to him, even though he has admitted himself each time. He got in a verbal altercation last time and it sent his fight or flight through the roof. He’s had people subdued by staff in his room. The lack of safety is probably his largest concern… that and not being able to get outside in a courtyard or something.
I say all that to say I am having some of the same feelings you were and my husband is going through some of what your son is.
Today’s update - his pdoc was very low-key and casual in the appt, as always. And, I didn’t even have to bring up anything about the delusions, which was good.
He didn’t want to discuss any specific symptoms, so the pdoc asked if it was OK if he looked over the hospital notes. Then my son mentioned he wanted to try Vraylar, so he’s on that at 3 mg/night - it’s new-ish and not supposed to cause weight gain & other side effects.
The only symptom he did mention was that now he was almost afraid to touch doorknobs, because of his stay. When he was in the hospital, he would keep trying the doors to find a way out, and he swears they would yell at him and push him over it. I’m guessing he may be exaggerating a little bit, but it’s not something he would make up, so I believe something did happen.
So, they also put him on 10 mg of Trintellix too - a new-ish version of prozac & zoloft that’s also supposed to be easier to tolerate with less side effects than other things he’s tried.
He wasn’t supposed to take the Vraylar until tonight, but he took it on his own in the car, so that was good.
The only thing that worries me, other than if it will work for him, is that he said Vraylar was for anxiety. The doctor explained it would do the same things as Zyprexa when I asked, and he didn’t say anything else, but if he’s expecting it to mellow him out like Valium or Klonopin, we might have a problem.
Either way, I’m hoping this will be the golden combination. He has a month’s worth of samples, an appt in 4 weeks, and instructions for us to call if he has a problem or decides to stop taking it.
EDIT: I’m going to predict that my son will love Vraylar - I’ll need to get prior authorization for this med, and it will cost either $300/month or $600 for 3 months on my insurance. It’s well worth it if it works & he’ll take it, so I’m not complaining, but it seems like for us, I should just always go with the most expensive option possible, and that’s the one.
Saturday - he took his Vraylar again today, on his own. And, let me hand him the new antidepressant this morning when I noticed he hadn’t taken it yet. It’s too early to know if it will work, but it’s been a good day all in all. He gets aggravated with me for hovering and asking too many questions, but he’s laughed some & noticed the blue/silver lizards we have on the deck. They run as soon as the door is cracked, so I don’t think he’s ever noticed them before. He went for a short walk in the woods behind our house. He played his bass a little. He said he slept some last night, but it couldn’t have been much since he was awake when i went to bed & when I got up. He says he’s tired now though and will make it an early night.
Sunday - I reminded him to take his morning meds a few times - the Trintellix - and he finally said he did. When I checked, he’d actually taken two of the Vraylar’s instead because he got the pills mixed up. At least he’s taking them without complaining about anything other than my frequent reminders.
He says he’s sleeping a little, but I don’t know - he’s up after I go to bed and when I get back up. He talked more about his delusions than yesterday, but also made a comment about not talking to me about them because I don’t believe him anyway.
It’s only the third day, so I’m hoping for the gradual changes everyone else talks about. I’d really, really like this one to work since he seems OK with it. No side effects so far other than a little headache last night. He did ask to go to a store today, and went in, but was very careful to avoid people - that’s fairly normal for him.
1 Like
Slw,
Yes, I’ve been there and you’re doing the right thing but it’s extremely difficult. Our son was worse after his first and second hospitalization but now, five years into it, he gets (most of the time) that the meds are to help him. Our son is not socially active either but we’re starting with a SZ support group at the medical unit where his therapist (new to having a therapist within his Psychiatrists practice) is located.
So, I feel like small steps are progress. I’m working on living in the moment and finding ways to let him know that we’re in this for the long haul with him. I liked the book “The Road back from SZ”. It helped me to get a better understanding of how difficult SZ is and how a person can progress through many hospitalizations to eventually find their way in the world within their new context.
The biggest deal for me was to get support and to get educated and to learn to be very patient (I’m not but i’m on my way 
). Prays and hugs to you and your beautiful son.
3 Likes
Monday - 3 days on the new meds. Yesterday, he accidentally (?) took double the amount of Vraylar around noon, and was still up, alert & active until after I went to bed around 11:30 PM. He was up part of the night according to the kitchen & living room, but was fast asleep when I checked around 7 AM.
Of course, he has an appt to meet his case manager at 1PM, but if he’s sleeping, I’m not waking him. If he doesn’t sleep, nothing gets better. Of course, he could have just went ahead and took a left over Zyprexa just to get some sleep too - even when he wasn’t being med compliant, he’d use them now & then just for sleep. Either way, sleep is good & I’ll take it.
Edit: He was awake when I came home from the office at lunchtime and agreeable to go, so off we went. He seems fairly happy today, listening to a lot of music, a little delusional discussion here & there, but otherwise quiet. Gradual is hard for me, so I’m hoping he’s slowly going in the right direction. Being in public is still very hard for him, it seems to even be hard to be in the car.
2 Likes
I know you are afraid to trust it but it really sounds like things are improving. I’m very happy for you both if this is the case. My son and I attended a family reunion over the weekend and he came in and participated the best he could. He even tried to talk with some family members and gave hugs to aunts. We had a decent drive out and he was more present than he’s been for awhile. Not so good friends looked him up last night and I was pretty sad about that choice. I don’t think he slept much. It’s like a roller coaster, isn’t it?
Roller coaster, or like someone’s constantly pushing me out of a plane without a parachute.
I picked up the dishes in his room while he was doing something elsewhere in the house (he doesn’t like me to clean, says he’ll do it, but hardly ever does), and found one of his pills on the floor - that must be why it looked like he took 2 yesterday.
So, afterwards, I brought him his pill and used the excuse that he should take it while he was drinking some ice water. He took it, but then said something about I just needed something to make him take. When I reminded him this was what he chose & what he said he’d take, he didn’t say much of anything, but there was still the attitude.
That was my bottom dropping out from under me today, and one more example of why I always search for answers, but I try not to be too hopeful. But it’s all good, I’ll bounce back by tomorrow, I always do.
It sounds like you had the same kind of thing happen - a nice weekend, then the bad friends. It’s always a step forward, a step back.
1 Like
Yep, I bet it does feel that way after awhile. I also feel as though I’m walking on eggshells when his meds weren’t working. The Invega shot is helping him and I’m also learning to hold my ground and guess what he is less demanding and let’s it go. Tomorrow could be unbearable but who knows? At least he is finally sleeping and that always helps. He is due another one next week. I hope he continues to accept it. Take care and good night.
Tuesday - a full week out of the hospital and day 5 on Vraylar.
Apparently, I don’t talk about anything but medication, and he doesn’t want to take the trinfillex anymore, which is OK by me if he’ll take the Vraylar.
So, I told him I’m not going to mention medication or pills anymore, but I am going to hand him one pill a night and he’s going to take it. Then, we can talk about anything else he wants to talk about.
We’ll see how that works, but I’ve decided no pills means no cigarettes.
He also keeps telling me he took Vraylar in the hospital, and he said to the doctor it was good for anxiety. So, I don’t know the deal on that. Did they try it with him? They kept telling me Zyprexa. Did they give him something else for the anxiety and he thinks it’s Vraylar? (He said he could take 2 Vraylar because he never had a problem when he felt so bad he doubled on the Klonopin, and they were giving him 3 mg of Vraylar in the hospital.
Or, was someone else taking it there & telling him how good it was for the anxiety? And, he’s assuming it’s a benzo?
I’m really confused about that, but I’m no longer allowed to mention the word that must not be spoken, so I won’t ask & just hope I can keep him taking Vraylar long enough for him to be willing to take it.
And, of course, he still has a deal with Coke & Mentos - so every time you guys get a Coke at McDonalds, or drink a Dasani water, or see a Mentos commercial on TV, you’re paying him.
1 Like
Good plan - hope you can stick with that.
1 Like
Wow, how excellent and rich you must be now:) Big hugs mom. My son thinks his antidepressant Is Ativan or something similar. At least he is taking it. For my son I literally place them in his mouth and he takes them. If I give them to him he may put them in his pocket, lay them down, or snort them. It seems to work better just placing them in his mouth. Weird I know. Wow it never occurred to me to say no ills no cigs. Let me know how that works please. I’ll have to try it too.
When he wants something, I tell him if he’ll work with me, I’ll work with him.
He gets what he wants, then I get attitude when it’s time to take his pill, so if it comes to that, it’s what I’ll try.
I’m going to just give him his nightly pill too. Easier than being disappointed he didn’t take it on his own, or arguing about it. And, by just giving it to him, I don’t have to say the words that must not be said.
New delusion, or at least first time I’ve heard it - on his way to see his therapist (he’s in there now), he asked me why I sent him to surgery to get a phone put in his head.
I asked why in the world would you think I’d do something like that. His response was, I don’t know, maybe to help me communicate better.
I asked him if he wanted to go get an X-ray of his head so he’d know for sure if the phone was in there because “they” could put a phone in without leaving a scar. He said no, that would be weird, and he wasn’t that worried about it.
Hopefully, that’s a fading delusion even if he’s just now mentioning it. But, I guess it’s a step towards me being a target of his paranoia.
I’m really afraid that these thoughts will never go away - they don’t go away for everyone even when they’re med compliant. And, now, his standard answer for all this stuff when he doesn’t want to talk about it is a standard “it’s complicated”.
At least life’s not boring and it’s always full of new surprises, right?
Right now, I’m trying to decide how long to wait before I call to ask if he should increase the Vraylar.
Maybe next week - I have to get preapproval for it anyway from my insurance, so I was going to call anyway to get that started. It could take 2 to 3 weeks - ridiculous for a drug that helps people with psychosis. If I hadn’t checked the price up front, I wouldn’t have known about that until I took a written script to the drugstore. I f’ing hate that.
I’ve had them do that with mine as well. Sometimes, they even kind of trick you & let you get it filled once or twice, then you go for that third refill, and they want to do the approval process. So, suddenly, you don’t have the meds you’re used to for a week to three weeks. That sounds like class action lawsuit material to me - it’s unbelievable.
It won’t be easy - I can tell you that.
I’m sure there will be a big fight. But, I also got called a dumb B or stupid B a few times this afternoon.
Then he calmed down & talked a little nicer - again, it was all over the meds and who’s in control.
But, it’s all good. Dumb B’s are too dumb to buy cigarettes.
Yeah, I’m a Stupid Bee sometimes too.
1 Like
This morning, he asked for a Vraylar - I asked if he wanted to call the doctor & see if he could go up in dosage because he’s acting like he’d want to take one in the morning & one at night.
He wouldn’t say call the doctor, but I guess I will anyway. His Pdoc is always good about adjusting the dosage, but I’ll need more samples to make it through the month, or they’ll have to get the pre-authorization going.
Edit: My son doesn’t see it, but I know he sometimes hears people say things they don’t, but there’s always been a real person there. This time when he got sick, he said for just a few seconds, the president talked to him from his TV (he will watch TV in other rooms now, but he doesn’t watch his own, and we had just bought him a nice, big 4K TV for his room for his birthday).
Yesterday, he asked why I took him to surgery to have a phone implanted in his brain - think I posted that. He said he wasn’t worried enough about it to go get an X-Ray to see when I offered, but I wonder if this means he’s hearing voices now?
He asked for the Vraylar about an hour ago, he said he can feel it working already, but he’s laying in bed, in the dark, with the covers over his head …
I’m waiting on a call back from his Pdoc to ask if it’s a bad reaction to the Vraylar since it’s supposed to be gradual, if it’s not working for him at all, if he maybe needs more?
He also said he didn’t want to take the Trintellix anymore yesterday, and I think the Pdoc will be OK with that - it was a last minute addition anyway just in case he was feeling OCD about doorknobs after his experience in the hospital when he was reprimanded over & over for touching them - or thinks he was. He’s saying they hit him every time, and I think he believes that, but I certainly hope it isn’t true.
EDIT: Doctor said to take him up to 6 mg. No surprise there - he usually needs really high doses to stop the psychosis, then he can sometimes come back down a few months after he’s stable.
He’s gone from coming out of his room, talking a little, joking around - it was good to see even if he’d talk about the delusions some. Now, he’s pretty much staying in his room in the dark.
1 Like
Thurs 9/22 - he took his Vraylar in the morning & at night yesterday, then in the morning again today. He’s out of his room & talking, which is much better than yesterday even if some of the talk is still about his delusions. His good mood seems to be back.
So, I’m hoping that the 6 mg is what he needs to keep the good effects & it doesn’t fizzle out on him again. I’m very hopeful for this one, but I’ve also read the drug trials and they said that over 6 mg increases the chances of bad side effects by a lot.
2 Likes
Yayyy! He is asking for his meds. Excellent news
2 Likes
He asked for the meds, even took his morning one on his own while I was at work, but he’s still not having any better insight. Still, I’m just happy he’s taking them, and I’ll go with it while it lasts.
2 Likes
Absolutely! I would count that as a positive in the right direction. Happy day
2 Likes
Well, no more Vraylar. He said he doesn’t want to take it anymore - it works for an hour, he feels good, then as it goes down he feels like he’s having a panic attack. He said it’s whether it’s once a day or twice a day.
He said he’ll take the Zyprexa until we get back in touch with the doctor or get a new appt to try something else. I think I’ll just give him the 15 mg pills at night instead of arguing about it twice a day with the 5 mg in the morning & 10 mg at night.
I was hopeful, but it wasn’t really putting a dent in his delusions anyway, even though he was talking about them less. At least he “says” he’ll take something - although I’m nervous about it.