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New depot change


#1

So this week my son changes from Paliperidone to Zuclopenthixol (clopixol)
Depot, he will have the new depot every two weeks to begin with.

Has anyone experienced similar to this.
His paliperidone is monthly and has been now for almost a year.
It goes in a sort of cycle, He is stable, caring, humanistic , then he changes about mid month, but recently he seems to be back in some ways to what he was like before the med started, i.e. he has distanced himself from us , seems to be in his own world, walking about more, heard him walking from the minute he got out his bed this AFTERNOON, thats another thing its after mid day when he wakes now.

At the weekend we had the blame, i.e. we are on THEIR side, we never protected him, we let them take his soul, them, them, them.
He said also, that when he had his flat (we had to make him leave almost two years ago) that no one came to him, I said that was because he wouldnt give anyone his address and we didnt know where it was, he had an answer to that, if he had told us where he was living, then we would have told THEM right away. yep them again.

So here we go trying another AS , I really see so much negatives, and wondering if its him , his illness or the meds,
He does nothing, he wont pick up a book, he literally either watches tv, music channels, or impractical jokers, simpsons etc or he will be walking around the house.

I really can’t remember the question i wanted to ask, but you get my drift?


#2

It’s the disease.

I know you know this, but in case you’re starting to think he’s just lazy, or mean, or a bad person, he’s not.

“Them” is a paranoid delusion. When you try to use logic on them, they can come up with plenty of reasons why they’re right & we’re wrong. I just apologize without outright admitting I’ve done anything wrong, tell him I love him, and I’ll try to do better when that kind of thing starts. Anything else is a waste of energy.

In your case, it might be better to just follow the advice my son’s first doctor game me. Discuss it once, then the next time it’s brought up, tell him you already told him what you thought & then change the subject. It’s OK to tell him you know that he believes it, and you know he’d never lie to you, but you don’t understand how it can be true.

When you see him as stable & caring, you’re seeing your son again.

And, when we see them doing nothing, maybe they’re not really doing nothing. Maybe it takes all the energy they have to hold it together as well as they do. The pacing is a symptom - psycho-motor agitation. It can be from the meds too, but my son paces constantly as he gets sicker no matter what he’s taking.

I loved the idea of the injections, but in practical use, they just weren’t right for my son. Or at least the Paliperidone you guys are leaving behind wasn’t working. Let’s hope this next one works for your son.


#3

Just read this out to my husband, thank you slw, I know you understand, I like what your sons first doctor said. I will try it, as any other way zaps us of so much energy doesn’t it.

He has to have a depot as he is on a community treatment order, has been since hospital discharge in Aug 2016.
Hoping the new one works better.
The pacing you must find quite tiring ? I do, when I mention it to him he just says he’s fine. Yes maybe I should look at it that way that he’s not being idle or doing nothing, maybe his mind is soo “full” of other stuff. Thank you .


#4

The pacing used to drive me nuts.

He told me he just can’t help it, and it makes him feel better, so I just ignored it until I got used to it.
Now that I see it as a symptom, it doesn’t bother me nearly as much because I truly believe its not something he can control.

In the hospital during visitation, I’ll just pace right along with him sometimes.

As the psychosis calms, so does the pacing. That’s why I don’t think my son’s is directly related to the meds.

And, while it is exercise, I don’t think it tires him out - or not enough to make him sleep. When he’s manic, it seems like nothing makes him sleep.


#5

I’ve seen a lot mention sleep, my son in the past had trouble sleeping, in fact I can go back to him being 12 or younger and he used to come in and tell me he couldn’t sleep. He has stayed out all night before and not slept.

It’s the freak creak creak of our floor upstairs that drives me nuts at time but like you, I’m getting immune to it .


#6

My son’s never been a good sleeper, and I still think if he can get on something that helps him sleep regularly, 90% or more of everything else will fall into place.

If you look at studies, everyone starts to have psychotic symptoms if they go a few days without sleep.


#7

Not much to add as @slw really covered it. One thing I would like to throw in is that I now see the pacing in a different light. Drove me crazy at first, found myself almost as agitated as my son was but realized that it was another symptom of the disease and that he needed to do it. Now that he is stabilized on a high amount of Clozaril, the pacing is now a sign for me to let me know he is going into another “dip on the roller coaster”. A signal letting me know to keep my eye on him a little more closely for bigger symptoms such as sleeplessness or self harm. I don’t know if that helps but I wish you all the best!


#8

Yes it does help and thank you , thinking of you too.
I know Im going to sound crazy, but here goes, I sometimes still seek confirmation about my sons illness, its not like I can’t accept it, its the fact I need it said firmly to me.
Sorry if that doesnt make sense to you guys on here,

I think its harder as I struggle a lot with the fact he is on compulsory meds, he has no insight and wouldnt take them i don’t think.
I know others on here are in the same position, but making an adult do something they are so against can get wearing at times.

Part of me at times wonders what would he be like off the meds? but I know Im being silly thinking that,
If he hadn’t had these meds for a year, would the illness have gotten much worse?
Or is this illness a progressive one anyway,
You guys seem to be told so much more on the other side of the Atlantic, is it because every time we see a Dr our son is with us and its sometimes hard to speak to him.

I still struggle with the trust issues, when he doesnt trust us i know he is slipping again.

At the beginning I did look at his phone, but stopped months ago as he was sending texts to this man he worked beside 5 years ago, co-incidently my son “blamed” the man back then for psychically bullying him, not physical but through his mind.
Then my son realised that to be untrue and suddenly started confiding and turning up at this mans door.

He is back to texting this man now telling him the mental health staff are imposters and the police have been in on this since the get go, his words.
he says they are criminals posing as mental health officials.
How can he text this, then in the next moment go and get the dog in from the garden and attend to him.
So sorry guys I must sound silly being so mixed up.


#9

I don’t know that anyone tells us anything here.

I get very little from the doctors - although I try to push as much information I can to them, however I can get it through. Usually, it’s not face to face.

I think we all need reminders that it’s the illness.

And, even without a court order, I’m definitely making an adult with no insight take meds against his will

As far as whether or not he would have been worse, you’ll never know. But, I personally don’t think it’s working for him - or not working much. I’ve said they might as well shoot my son up with water as give him the Paliperidone. The pills seemed to work while they would let him have them, but the shots were inconsistent at best - and nothing at worst.

Yesterday, the doctor said the shot must have done something since he seemed worse than the last visit when he got the shot. I don’t know what she was thinking because he wasn’t due for another shot until this coming Thursday, so it should have been working that day.

Some days, I feel like I need to come in with a huge chart showing a timeline of meds & symptoms to keep them on track.


#10

Thank you and yes actually my son has even said they aren’t even injecting him with anything yet, is this because he still feels/ hears the same things.
Last week he said he heard the word “sunglasses” so he started wearing them all the time.

If only they he would consent to pills.


#11

What exactly medication wise is your son taking?


#12

He was taking 234 mg Paliperidone injection, 300 mg/3X a day Trileptal for mood stabilizer & 1 mg/2X a day congentin for side effects.

They changed him in the hospital about 10 days ago.
Now, he’s on 150 mg/day of Clozapine (anti-psychotic), 300 mg/3x a day Gabapentin for mood stabilizer & 50 mg/day Trazadone for sleep.

They’ll move him up to 200 mg/day of Clozapine this Friday if his blood work looks good.
Then keep him there for about a month before they say he can go up again unless something extraordinary happens.

This is how funny these meds are.
He came home from the hospital last Friday & was sleeping well. All night & a few short naps during the day.
This slowed each day until he was up all day yesterday & probably slept about 6 broken hours during the night.
He was asleep at 1:30 AM, but somewhere between then & 4:30 AM, he got up, wanted something else to sleep & took some Remeron. He’s been on & off that since he was 17, so he knows he tolerates it well, but last night he was sure it would kill him.

I knew smoking could make him metabolize the drug faster, but I didn’t know how much faster. Apparently very fast. Then I read that it’s not the nicotine - it’s the tar.
So, last night, I went out & got him some filters to remove most of the tar & he thought those were pretty cool.
And, he said he would switch mostly back to e-cigs - no tar there.

This morning, he took his meds, ate breakfast, then went to go lay down about noon and has been sleeping for 4 hours straight. He needs to catch up on it, so I’m not going to worry now about him sleeping too much.

My only worry now is he won’t be awake tomorrow afternoon for his blood test. I’m sure I’ll get him in there sometime before Friday, so it counts as this week.

There’s not a lot about Invega & smoking, but I’m wondering how much the tar could keep any of these drugs from working.


#13

@Jane57 You absolutely don’t sound mixed up. It is the mental lot in life that all of us with loved ones who have this illness are stuck with. The nature of all of it is confusing, causing so many crazy emotions, sometimes all of the emotions happen at one time! The delusions for all of our loved ones are different, but in some ways the same. My son believes that someone from the government is in his mind, through a satellite. They accuse him of horrible things, mostly sexual, and just for fun they torture him by somehow sending electric shocks through his body. When in severe psychosis, he would wake up screaming because of it. He would text and write on paper like crazy, so I was constantly reading what he wrote. Most times it was gibberish, but sometimes I got a small amount of insight into what was going through his head. Guess I’m going on a bit and venting myself, but wanted you to know that you are not alone in feeling like you’re confused. I am thankful to say that my son is no longer in psychosis but we still have so many ups and downs. The health care system in Canada for people with mental illnesses has a long way to go to. Confidentiality rules here were almost responsible for my son dying, and I’m not sure that the rules will change anytime soon. Hang in there, and no that all those feelings running through you are normal and have been felt by all of us at one time or another.


#14

He might be feeling that for real.
My son has started complaining about random shocks. It’s just been a few months & it’s not tied to his delusions.

That kind of feeling can be a sign of neuropathic pain, and their nervous system is going haywire.

His psychiatrist didn’t make much out of it, but I make notes of whenever he mentions it. It’s not often, so I think he must feel a few “jolts” close together, then it doesn’t happen again for a few days.

I can see how he would think that “someone” is doing that to him because it must feel really strange.


#15

Ya, I never really knew for sure. “They” could make him move his fingers, and controlled me too. If I dared to touch my face, he asked if “they” had made me do that? When he was in full psychosis, he was being tortured daily, especially in the mornings, and I have no doubt that he truly felt it. Those screams were real. Interesting idea that it could be tied to his meds or a neuropathic symptom. The Dr, at the hospital didn’t bring that up but did say that he was probably feeling everything he was describing but sounded more like psychosomatic pain. The way you describe it makes way more sense to me. I hope things are going better with your son! For mine it took months on the clozaril before I felt that he wasn’t one step away from the hospital. A year later and I would be surprised to see him have to go back. Maybe a bit naïve but I’m hoping and praying that I’m right.


#16

They told me in the hospital that pacing is a coping mechanism. Also people report here that medicines cause pacing. It is something we just accept now and perhaps you will too.

I’m thinking that the depot is the only way to go for my son. I just have to convince him that it is necessary in order to stay out of the hospital.


#17

A man with scz that came to speak to our FtF class would use the phrase “its tricky” to explain things that can’t be explained.


#18

I guess. It’s so hard for us let alone them to understand.


#19

My son has / had some of similar delusions, he would say he was going to be trafficked and used in the s*x trade in another country, usually afghanistan.
Then now he is going to get drugged, put in a wheelchair then in a bulletproof car, taken to NYC and blown up . Also would say people were framing him thinking he was a paedophile, some really random stuff going on .


#20

Yes, random, but quite normal for life with sz. My daughter is currently being killed by God. This time tomorrow she’ll be dead, she says. But tomorrow comes and she’s still here. God is dissolving her spirit now. Oh, and God also says she’s Satan, so she’s going to commit arson.

It all sounds so alarming, but as we all know, it’s the illness talking. When her episode is over, she’ll be quite different, trying to write a novel, does 3D computer modelling, cooks etc.

Great advice from slw by the way.

Clopixol is an old drug, developed in the 1960’s. It’s a typical, rather than the more modern atypicals like Paliperidone. Any drug is worth trying, it could just be the one that suits your son. Injections are very good for those who are not good at remembering to take their pills, but the experience seems to be mixed. The injections don’t seem to work in some people, and in others it seems to run out of steam towards the end of the period, and needs topping up with pills until the next jab.