Family and Caregiver Schizophrenia Discussion Forum

Energy /motivation levels


#1

My Son 25 has 150mg of paliperidone depot each month.
He just had it this morning, He has no motivation or very very little, he did go to a soccer match last week but apart from that he wont go out unless to the local shop 3 mins walk away from our house.
He wont walk the dog which he used to do regular.
Same with his room, he leaves clothes on the floor, blinds down all day etc,

He used to be such a tidy person, I go in every now and then, I ask him to tidy it, he,ll say yes later, but never does.
Same with his hair, had a haircut once in 6 months, I keep asking are you going to get your hair cut, This i put down to the meds it must be as he wasnt ever like this before.
Yes they help, they have calmed him, calmed the frustration , anger etc but as for motivation its awful. He walks around the house most of the day, can’t really settle but he wont go out and use the energy walking around outside despite living right on the coast and having a lovely beach, nice walks etc.
Anyone else find this? do you think it could be the meds? or the illness but he wasnt like this before meds.


#2

Try giving him Sarcosine, it boosts their moods. I would say it’s the illness since all he does is lie down in bed all day, but with the Sarcosine, he’s actually starting to write again and play instruments.


#3

My son has been on the shots for nearly 2 months. They have him on a 117 mg injection per month at the moment.

When he came home from the hospital, they also had him on an anti-depressant - 10 mg/day of Trintellix. He stopped taking it when he came home, but recently said he’d try it again, but it’s too soon to know if that was the difference.

I was so hopeful when he came home. He stayed for 10 or 11 days because they let him come home as soon as they gave him the first 2 starter shots, letting me know he wouldn’t be well, but should gradually improve. And, he did. He was much calmer & happier, not paranoid, and talked less & less about his delusions each day.

He also soon started talking about maybe he could learn to this or that to get a job, and maybe he’d move out on his own - all kinds of things. Now, the delusions seem to have came back, and he’s also showing the lack of motivation you talk about.

He does bathe daily right now, sometimes twice a day, and he’s taken to shaving his head religiously, so he looks very well groomed even if he does kind of live in sweats and slippers these days. No complaints - I’m just happy he’s clean.

He doesn’t do much to clean his room, but he’s not doing much to make a mess either. We pick up any dishes or clothes every few days and empty the ash trays, and it’s mostly OK. He does apologize for not being able to clean up as much as he thinks he should.

So, I think we’re in the same boat you are, except for I’m trying not to complain too much because he is still so much better than he was when he went into the hospital. But, I was so hoping that his earlier motivation would stick. People keep telling me to give it at least 6 months to make sure it’s effective, and he’s only 2 months in.

I have some of the sarcosine. Maybe I’ll try giving him that again. When I first got it, I had to put it away. He was getting what he felt was a mild high off of it, so he was taking a ton of it. I don’t know if you can OD on it or not, but he probably went through a week or two’s worth in a single day.

Sorry - no answers, just letting you know I’m right there with you and have no idea. My guesses right now are that he was way sicker for much longer than I knew, and it’ll take him longer than I thought at first to get better. And, the Invega injections seem to do absolutely nothing for his anxiety levels - especially the social anxiety. I keep hoping the Trintillex will help there if I can get him to take it consistently for long enough. At least he’ll take a pill now - before, he wouldn’t take anything at all orally.


#4

Slw, you are right it is so much better than it was here too.
My son won’t talk about the meds, never mind take any other supplements etc. It’s a struggle. He even still says that his cpn isn’t a real nurse , they are not real drs and they were brought in just for him.

He now has a thing about people saying “see you later” as in goodbye for now type oh thing He believes or he says so that they know it’s become is going to be kidnapped and taken to of all places Afghanistan. We are in uk.

He said all this today and looking in his eyes as he spoke, it was really real to,me that he feels this way.

His dad is only just home from work and he’s saying stuff not him, hubby is impatient at times, he has been working a lot. They clash and argue and I’m so sick of it. Yes son is quieter and more respect and caring for me but still it’s a struggle.
This is now 6 months since he was discharged and has been on paliperidone 7 months.


#5

My son clashed with his father too, and the sicker he got, the worse they would argue.

But, my husband has finally “got it” now and stopped with all his excuses for why our son didn’t really have a serious mental illness. He tries his best, but his mere presence is still enough to shoot my son’s anxiety through the roof.

Luckily, we were already planning to put a big camper (caravan in the UK) on some country property we own about 45 minutes away where my husband has all his hunting dogs (14) and a few dozen chickens - plus ATV’s, tractors, etc. In the 10 years since we bought it, he’s became BFF’s with one of the neighbors and he was out there all the time anyway. So now, he comes home once or twice a week to do laundry & stuff.

I think it’s helped relieve some of the pressure for everyone.

My son’s thing is that he’s psychic (predicting the future, reading minds, etc.) and that he knows famous people he can’t possibly know. As bad as that is, at least he’s not saying he can enter the TV through a pixel and control the programming.

However, I am so curious about how he was able to go a few weeks without even mentioning a delusion and being very hopeful for the future. I’m thinking it was either 1. He is rapidly developing a tolerance to the drug which is very possible for him or 2. The pressure of everything he would have to do to make his dreams come true is so much he’s retreated back into his fantasy world where everything is OK.

At least he seems fairly happy at the moment, so there is that and he doesn’t seem paranoid at all, other than he’s very anxious about going out in public.

Your situation is so tough with him being so afraid. We’ve been there before & all I could do was keep reassuring my son that we’d never let anything happen to him. Sometimes, that meant we were all sleeping in the same room so that he could feel safer. We have two really big dogs, so I would also remind him that no one would ever get past them.

As much as I hate to give anyone another reason to feel paranoid about being monitored, have you thought about getting him some kind of tracking device? They have them for people with Alzheimers and children with problems. It might reassure him if you could tell him an alarm would go off if he was taken from the house? and that you’d have a way to find him? We have GPS enabled tracking collars for our dogs & the technology is amazing.

The reason I mention these devices instead of a smartphone app is that you have to link the two devices together, and you could relink them daily so that he’d maybe feel like no one else is getting the signal?

I know it’s a crazy idea, but I get desperate & come up with all kinds of crazy ideas trying to fix things.


#6

@Jane57 How long has he been on this regiment? I don’t know if you read some of my previous posts on the topic but I have been through this and it is pretty common but it can get better…It started improving with my son about a year after he had been steady on the meds. It helped that I did things along with him in the beginning…walks, shopping, errands, dishes, movies etc…now he will do things on his own…not every day but enough that I can do my own things by myself or with others when I want to.


#7

@Catherine - did you see any improvement in your son before the year?
And, did you see any improvement, then seem to lose ground, and then see improvement again?

I don’t know if you’ve seen any of my recent posts, but my son is about 2 months in on Invega, he had a couple weeks of not talking about his delusions at all, now they’re coming back slow & steady.

Maybe it’s a 2 steps forward, 1 step back kind of thing, but I’m very worried that it’s the beginning of a slow decline back to where he was.


#8

These are negative symptoms of schizophrenia. I personally believe the medication causes these symptoms though. Like doctor I would also recommend sarcosine. It does help improve your mood and cognitive functioning. It may help with motivation as well. I can tell you I am on invega sustenna 78mg and some days I do more than other days. I do work part time but I still have a lot of time to myself to do nothing. The consensus that I was getting online is that people usually do better on the lowest dose possible of aps. I know the pdoc might not be willing to reduce the dose though.


#9

Yes the first year was back and forth at times…The dosages were tweaked here and there as needed but after 6 months the voices and visions were greatly reduced and by a year they were gone and his speech and thinking was much clearer…There were still bad spots once in awhile but everything on the whole with his behavior improved dramatically after the year. I think pdocs should be a little more forthcoming on reasonable expectations and timelines of the meds they prescribe…It’s not at all like with physical illnesses when you you take a medication and you feel better in a few hours or days. The recovery is more gradual.


#10

I would also like to add here that I am not convinced that most people with schizophrenia live the most productive lives. They may be free of most positive symptoms if they take their meds. Nami estimates that only 10 to 24 percent actually work and it’s usually only a part time entry level job. Very few ever work full time. It makes me wonder what they do with their time. It does scare me to have to go back to work full time. I think it would be hard on me. It seem like I need some time to myself to just relax and do nothing.


#11

@Catherine - thank you so much for the explanation. I think the more I read, I just need to learn to be patient & not push for them to give him higher & higher dosages just because he’s not recovering as fast as I would like.

@jassy22 - my son used to be a prolific artist and a dedicated musician. He still enjoys listening to music, he plays when he’s having a good day, but he says he’s forgotten how to draw, so he doesn’t do much artwork anymore. I would be the first to say he needs to do something so that he’s can stay out of his head and more in touch with the real world, but I don’t think he could cope with even a part-time job right now.

I talk to him about volunteer opportunities - he’s not interested. I talk to him about going to a group thing they have here 3 times a week in the afternoon. He says he will, but hasn’t yet. Same with bingo & stuff like that. So, I content myself with getting him engaged in conversation or helping me cook or whatever other little things I can think of. It’s hard for him because being around just about anyone sends his anxiety into hyperdrive. He used to have a few friends he was cool with, but they couldn’t handle the progression of his illness, so I’m about the only person he can deal with without stress right now. Sometimes, he can’t even tolerate being in the same room with his father.


#12

Thanks for sharing slw. Best of luck to you and your son.


#13

I also wanted to let you know Jane that he could have some anhedonia. This is the inability to experience pleasure in everyday activities which may explain why he doesn’t feel like doing much. The neurotransmitter dopamine in the brain is associated with experiencing pleasure and with schiz, it is believed that the brain produces too much of this neurotransmitter. Aps block too much dopamine and this may explain why someone feels a lack of enjoyment out of daily activities. I used to have this pretty severe. I can tell you it is not as bad anymore but I do still have it. My life is not the same as what it was before I came down with schiz. I have a lot of emotional flatness where you don’t feel much emotion good or bad on these meds. It absolutely sucks to live your life feeling this way. I still feel the lack of pleasure out of day to day activities as well. Also based on my own personal experience with schiz and based on what I know, I don’t think that most people with schiz live the same type of life that people without mental illness live.Even with being on the right med for years. For example, most are not out working and they are not married and raising a family. I also wanted to mention sarcosine again because if he takes it and it makes him feel better he may want to take it.


#14

Thanks jassy22 and I’m so pleased to hear that you are stable and doing well.
I offer him every day suggest of things to do. He does like though to play board games with us like scrabble etc so that’s good.

Reading about ahedonia it does sound like he may be indeed have this. Of course he won’t listen if I suggest it . We can’t discuss meds, treatment etc as “he is not ill” thank you.


#15

Slw, thanks for your suggestions, it sounds like you know so much more than me, I have a lot to learn about my son still.

The psychic thing is similar to him. He believes people can read minds and he has to learn to , he might have to take a pill to,do it he says.
He seems to develop new delusions. Now it’s one of a guy he used to be at College with has magic powers and made my son say things (night out and he was drunk) that’s the simple explanation about why he said such silly things.

He had his depot yesterday and had a calm evening playing scrabble with us. He slept well and today he,lol be calm I guess.


#16

Thanks Catherine I will go and read your posts today. Pleased for you.
We were never told timescales etc. My son was prescribed risperidone last march in hospital, he wouldn’t comply for weeks then started on it late march. He switch to paliperidone in July last yr, so 6 months now.


#17

My son sometimes develops new ones every day.
I worry more about how agitated they make him or how bizarre they more than whether or not they’re new.

A lot of his seem to be a way to explain things that have happened too.

I’ve got to the point I treat him like I would an Alzheimer’s patient. I don’t actually agree with him, but I don’t argue about it or try to argue him out of them, unless they involve me.

So, he’s psychic, there are plenty of psychics in the world, but he’s mystified that I can’t read minds & he can’t control me with his. I make sure he always knows that if he wants to talk to me, it has to be with real, spoken words because I don’t pick up anything telepathically.

I say, I don’t know, I don’t remember that, I didn’t see that, I don’t understand those kinds of things …


#18

You all just gave me the idea to get a big painters cloth and large canvas and let them go at it. No lines just color. I wonder if that would be therapeutic.


#19

what a great idea! :slight_smile: