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Change of medication


#1

So my son hasnt been diagnosed with sz, but delusional disorder.
After being discharged from hospital last year he has been on a Community treatment order and was on paliperidone depot.
Over the last few months he has been unsettled and starting to voice some of his delusions again. He openly now talks of hearing others thoughts, and asked me recently when I had a thought in my head was it my own voice I heard saying that thought or someone else voice? i had to really think about it and tried to answer as best I could. He says he needs to be able to read minds like some others can.

Anyway he has changed meds (again no insight) he is now on 200mg of zuclopenthixol (clopixol) and has had a test dose and two other doses, with this one he has it every two weeks as opposed to every month. Its a typical AS , paliperidone was Atypical.
He seems very apathetic, very slow and no energy, he sleeps a lot more, not sure how many hours he sleeps but he is in his bedroom for 16 hours per day. he also paces at night in his room before going to bed. I can hear him from my room.

I really struggle and feel so bad at times, its like he is having no life, its like he is only on the meds to give us respite, does anyone else feel like that? its been a year since I seen him without meds, well 16 months really. He wants to be off meds and off the cto, I am tired of it, he wears us down with the same stuff.
The tribunal is monday, to see whether he stays on meds and cto. His dr and nurse are recommending he does, i don’t know any more .
I feel at times like give him what he wants i.e. off it all as I see no real benefit .
He has no life, only goes out if its with us, he will shower every day, put same clothes back on too, what is that about, I’ve heard this before.

Again the dr said this med will take a little while to get into his system and if it doesnt work (what does working look like???) they could try clozapine, but its a no no as my son wont allow bloods taken, he heard from someone in hospital that they will sacrifice his blood and thats why he wont allow it, so rules out clozapine.

On a plus though he has agreed to see the psychologist , which he wouldnt before.

Sorry for the long post any comments, or advice is welcome.


#2

Hello. I’m sorry that you’re going through so much, I only joined this site yesterday but it’s so good to know that there are others that understand how I feel and I hope you will get some comfort from that too. I can’t really offer lots of advice as I have more questions than answers if that makes sense but there was one question you asked that I recently asked my mums doctor. My mum has paranoid schizophrenia and recently has been really fighting against her medication, I asked whether she would be happier without the medication and what life would be like. Her doctor reminded me of a horrible time very nearly a year ago when she stopped taking her medication and went to a really dark and scary place in her head. The voices and hallucinations and delusions were completely ruling her life. The medication has brought her somewhat out of that place but it made it clear that unfortunately she does need the medication however much she says they’re poisoning her and she hates it she just doesn’t understand how much it helps. I’m sorry I can’t be of much help but this seems like a good place to talk. Take care.


#3

Aww thank you and that does help what you have just written. I think it is because as we care so much that we struggle with sometimes the idea of forcing someone, my grown up son to take something that A he doesnt want to and B Im struggling to see much improvements, but yes when I think of before meds and why we got to that stage and it all comes flooding back to how better it is, even for him as well as us as he doesnt seem as in as much torment as he was, or as manic, well thats an understatement as he is almost sedate at times now and that hurts to see that too. .

This is a great site with some wonderful experienced kind people on it so I’m hoping it helps you to post here too. Thinking of you too.


#4

I often struggle with this too Jane57. At times I look at my son and think, what kind of life is this for someone to live! Then I force myself to remember what life was like for him before the meds. I don’t like to go there often as I feel physically sick thinking about it. But when I do remember, I realize quickly that this life he is living at this time, is so much better than “pre-med”. Wish I could take this away for all of us!


#5

It’s good to know others understand what we all go through Leiann. Hang in there too.