Family and Caregiver Schizophrenia Discussion Forum

The pacing/walking around is out of control


#1

Son 25 has basically done this since belong in AP, he changed over a few months ago from paliperidone depot to zuclopenthixol 200mg (depot)

He has no motivation, he is very slow and in his room for up 16 hours a day/night.
When he isn’t in his room , actually even when he is, he is walking around, he will occasionally kick out at something lightly with his foot. All I ever get from him is I’m fine, even when we say it’s not fine. He takes no responsibility his care, appointments anything at all, all he does is eat, sleep,and occasionally go,out with me or his dad to a soccer game.
He wears the same hoody for days on end, he will though have a shower each day and get back into same hoody and other clothes.

We have a review on oct 9th and before that, his dad and I are having a holiday, he is going with our dog to stay at my parents but this walking about is so so bad. Anyone else have this?

He’s been on paliperidone, risperidone and now zuclopenthixol and all have this effect, but this is the worse one.


#2

Jane57, I’ve seen this and a nurse once told me it is a coping mechanism. Others think it is medicine related and I’m inclined to believe that as it is first hand. We first saw it when he came home from earlier hospitalization on Haldol. My son is currently off medication and is not pacing.
We are giving him space but checking in with him and getting him out as much as possible. He seems to be somewhat improved one minute and psychotic the next. He is present at times which is definitely an improvement.
He said he wants to go to family reunion with me tomorrow. I’m hopeful as it is an annual gathering he enjoys and he gets to see his cousins. We take it a day at a time and I have reset my expectations. In fact, I wonder constantly if I am doing enough but I have worn myself out before trying to get him to appointments and activities that don’t seem to benefit him. I ask him if he’d like to go but seldom insist.
It’s always changing and we will keep trying.
I’m glad you are getting a break. Try to enjoy yourselves.


#3

For my son, the pacing comes on when he’s in his worst manic phases.
As the drugs start to work, the pacing slows then stops.

I’ve also read that for others it can be a side effect of the medicine.

When he first got sick, before he was medicated, at his very worst, did he pace?

I’ve had the advantage of seeing my son on it when he was non-compliant, then stop when medicated, then start back up again as the meds quit working - until the tried the next thing. H’s got a predictable pattern of how psychotic/manic he gets and the pacing.

By the way, my son is doing pretty well compared to how he was a few months ago, but he also takes no responsibility for his care, eats, sleeps, watches TV, and occasionally goes out with me to the store and to his doctor’s appointments. He’ll talk about doing more now & then, but doesn’t follow through. At least he’s thinking about it.


#4

Hi I’m pleased at the recent improvement in your sin, mine can’t have clozapine as he won’t allow blood tests. He’s not frightened but he doesn’t trust what they may do with his blood.

My son never paced before meds ever. I think it’s the meds. Its causing tense as I woke at 2am with hubby going in and being cross with him as hubby heard him in his room walking.


#5

Thanks mom2. Glad your son is doing ok right now. I do think it’s the meds here.


#6

I didn’t think I could get my son to take pills twice a day, but here we are 3 months later & so far he’s taking them.
I’m well aware that could stop at any moment, but he said he hated that shot, so maybe he’ll stick with it.

If he’s not afraid of the needles & you get to a point where Clozapine might be the choice, maybe you can get your own little biohazard disposal container (I’m assuming diabetics have to have them?) and the lab may agree to test his blood then give him the vial & other testing stuff back? or drop it in the container in front of him?

I know that they test my son’s blood almost as soon as they take it - we go in during a very quiet time of the day & most of the staff knows him by name now.

Maybe you could call your local lab, explain the situation, and see what they say?


#7

Jane 57, that used to piss me off too. My son has an apartment next door and goes there to sleep at night. It has saved a lot of tension but I do realize not everyone has that luxury. Try to explain to your husband that it isn’t him but the illness. It took awhile before that sunk in with my husband and he is intelligent about other things. Hang in there.
Also explain to your son that you need your sleep. We have three sound machines, just the white noise type. One by each of our beds. They are a must for us.


#8

Thanks slw I’m going to ask about this when we meet psychiatrist on 9 October.


#9

Thanks mom2 , I feel torn , I feel I have to pacify them both.
I get so angry at mu husband when he loses it , it’s understandable by the way our son talks/ acts but it’s not acceptable and doesn’t help the situation.


#10

Been there and hope you aren’t there long. Meantime breathe deeply.


#11

Jane, my son is also a pacer. Drives me crazy at times. I wish there were two cases alike with sz but each person seems to be different than the next, the illness itself and the medications/side effects. But my son is also 25. He was just switched from the Paliperidone (Invega Sustenna injection) to Aripiprazole (Abilify injection). We are hoping he does a little better with mood, motivation and less pacing. It’s always nerve-wracking when he switches meds because what if it’s worse?

My son paces for two reasons. When his psychosis was really bad he would pace fast, hard, sometimes I’d see him throwing his arms around, kind of angry, talking to whoever he was seeing or hearing. It was a constant pace. Now he paces because “I think” of the medications. His doc said it’s part of akathesia. Makes sense. Now it’s a gentler pacing and he can actually talk to me while he’s pacing. He just can’t sit still sometimes. He paces and thinks or paces and talks to me. He’s not in the mental turmoil he was in and this pacing seems different, gentler.

He is taking propranolol 40 mg/3 x day right now to help with the akathesia. It seems to calm it down but it’s still a bit there, maybe out of habit. He often forgets his midday pill. My son is doing pretty well right now but if he slipped back even a bit I doubt very much he would take any of his pills.

When my son’s pacing was driving me a little insane I would (this is a bit creepy - haha) go outside at night and try to see in his window if he was talking to himself or someone. I couldn’t understand if he was still hearing or seeing things. When he thinks he’s by himself he’ll talk or thrash around a bit more if he’s in psychosis. The hospital had cameras in the rooms (patients didn’t know this) and they could always tell how bad their psychosis was by watching them when they were alone. So, if he’s having psychosis or it’s just side effects of meds would make a huge difference in how to help treat it.

I wish my son was well enough to go out and live on his own and succeed at it. I think he would be back in six months and worse than he is now. So for now he’s at home. He does the best when everything is calm around the house and I tell him he’s doing very well and he’s welcome to stay as long as he wants. He doesn’t have friends really and it makes me so sad. My hope is someday he’ll want to do a little more and have a friend or two he can get together with, even if they too are very low functioning.

And my son wears a winter coat with a hood 24/7. Even when he sleeps. It’s the oddest thing ever. I think it’s his security blanket. I’ve given up on getting him to take it off around the house when it’s hot outside. If we go places I’ll say, you should leave your coat in the car…it’s 80 degrees out and it’s a winter coat. He gets the picture and will leave it in the car. Who knows why but I think it makes him feel safe. He has two that are nearly identical so I can wash one while he’s wearing one. I’ve given up fighting him over his coat. haha

~~ hugs ~~


#12

One of my son’s case managers told me that some people with SZ lose the ability to regulate their body temperature.
So, that’s why you often see homeless people in the summer walking around in layer upon layer of clothing. I always just thought it was because they didn’t want to lose them.

He told me he had one client who kept his house so warm year round that it was hard to stay in it for long when he went to visit.

My son wears a hoodie too - all the time - but we buy lightweight, shortsleeve ones in the summer. It’s definitely a safety/security thing for him because he can combine that with sunglasses and feel almost hidden.

He usually likes it a little warmer in the house than I do, but I’m at that age where I’m hot no matter what. I’ve lost my ability to regulate my temperature too - but in the other direction.


#13

My son wears the same hoody too lol, even sleeps in it with the hood up! It says on it "keep calm and walk the cocker spaniel ". Oh how I wish he would !! And do does the little cocker spaniel who loves him dearly .


#14

Thanks Julieann
I will ask about the propranolol too, I had this once a day got me before I started on my anti depressant.
I wonder if aripiprazole could be a contender for my son.
Looking back the paliperidone was better than this.


#15

My family member paced and paced during psychotic episodes. Totally unmedicated.

The restlessness caused by medication seems to have a different physical manifestation. Cogentin was prescribed for that.


#16

I think I mentioned this, but when my son picks out a new hoodie, or any piece of clothing, that looks like it will wear well and it’s all he’ll want to wear, I buy 3 or 4 of the same thing.

That way, he lets me rotate them through the laundry.

Ever since he was little, he’s gotten attached to certain pieces of clothing and done that kind of thing.

Luckily, he likes the discount stores that sell last year’s clothing, overruns, etc. so most things aren’t more than $10 each.

And, he says Albert Einstein had a closet full of the same outfits so he didn’t have to think about what he’s wear, so I guess it’s not so odd - just a little eccentric.


#17

Interesting and good to know about the inability to regulate their body temp. My body temp is all over the place too, so I know what you mean by “other direction.” I’ve tried to get my son to buy lighter hoodies but doesn’t want to. I think as spring approaches next year I’ll try it again. It’s definitely a better option than a winter coat. Great tip.


#18

I’ll know in a few months how my son is doing on the Aripiprazole. I hope this goes well but I’m a bit nervous. One thing his doc told us (and please know I’m paraphrasing and I’m not a med scholar) was that all of the antipsychotics are dopamine blockers except for Aripiprazole (Abilify), which is a dopamine regulator, which should block or lower dopamine unless it’s too low, and then it would regulate it up. I think that’s why it’s given for depression (or I’ve seen ads for it on TV for depression). He thought it might help his mood more than the others. Again, take this with a grain of salt unless someone can pipe in and confirm this or you can research it, but that’s what I took away from what the doc said.


#19

He got some no-sleeve hoodies in Walmart that he liked for about $10-12 - they were made out of T-shirt material, and most of the time, he wore them over another t-shirt.

Then, he found some in a discount store we have here called Gabe’s - it used to be called Rugged Wearhouse, and it’s along the lines of a Marshalls, Burlington or TJ Max.

The first ones were short sleeve & made out of a light jersey material, but they shrunk pretty bad. Then, we went back and they had some made out of a lightweight material that’s similar to the quick-dry athletic clothes they make well - those are great. He says they feel good, they don’t stain easy, they haven’t shrunk, they wash well and they’re dark grey so they look good with everything. He’s wearing one right now with a pair of black lounge pants.

Going to get clothes now & then is about the only thing he’ll ask to do without prompting, but he’s only comfortable in stores like those where it’s kind of messy and really low key.


#20

LOL. My son talks about Einstein too occasionally. My son also has gotten attached to certain clothing his whole life. Funny how our kids have similar aspects of their personalities.