Do Meds Alone Work?

Family
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I’m kind of at an impasse.

My son was doing great coming home from the hospital.
He had 156 mg shot of Invega before he went in, but had stopped sleeping.
In there, they added 4 mg Risperdal per day plus 300 mg Triliptal & he came out not paranoid, not hearing voices, still delusional but less urgent about them, and in a great mood, cracking jokes & laughing.

Then 2 weeks later they up him to 234 mg Invega, drop the Risperdal & increase him to 900 mg Trileptal.

About 5 days after that, the laughing & joking pretty much stop, delusions increase daily, and he hears people talking to him through the TV, sees people’s eyes changing color, and is sure the Invega is meant to sterilize him.

That’s a big change in 5 to 14 days. In fact, he should be doing great right now - he’s right in the middle of the 28 day period & should have another week before things start to go south.

The treatment team is pretty much implying that he’s not going to do great without getting out & doing things instead of ruminating about his thoughts & delusions. I agree with that & have been trying to get him out there. He is paranoid about the case manager who would work with him on that too - take him places, get him involved in their programs, etc - so he’s resisting that.

Am I expecting too much out of the meds?

Has anyone else seen a big change with meds alone even though their family member isolates?

I am beginning to think that the hospital helps in part because it forces him out of isolation, but there’s got to be more to it with the meds too.

Any opinions are welcome because I’m at a loss.

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Here is just one of many articles about what is actually needed for treatment: Schizophrenia Treatment: Medication, Therapy, and Self-Care

Medication is key and any part of the treatment equation that is happening is positive.

The illness affects all aspects of life and all these aspects need to addressed for healing.

This wrap- around type of treatment with services is not readily available, and like your son, many patients refuse because their symptoms are in charge of their decisions.

But medication does so much for the people who need it. Sometimes the other services aren’t helpful until the medication part is as effective as possible. Stabilization with meds first seems to be the way most places work.

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Thank you for the link - I’m going to go read it straight away.

I’m not expecting the meds to be a quick fix, although I know I sound like that sometimes.

What I would like is some kind of improvement that’s sustainable for more than a month at a time.

We now have 3 times that he’s went into the hospital in 6 months. The hospital gets him into a good place. He stays there until the outpatient team reduces or changes things, then he starts sliding into his next hospitalization.

They think the hospital overmedicates and he’ll get side effects over time if he stays on that level of medication.
I get that. I also get that the forced socialization at the hospital probably helps him, and those benefits probably go away gradually.

I think my biggest worries are that he’ll continue to reject help that he really needs. Sometimes, he surprises me & does a turn about, so he still might get with the program.

And, that they see so many people that don’t get substantially better, that it’s the norm for them, and they’ve set their expectations for medication results way too low.

I read the other post about lowering your expectations. I get that, but I also think that if you lower your expectations, you get lower results too, so I’m not ready to go there. I’ve lowered my expectations in the past & stopped pushing, and that’s partially how things got the way they are today.

I think I’m going to go to my support group next week (I rarely go unless he’s in the hospital) and see if I can get some advice there too, and I think I’m going to finally pull the trigger & find a therapist of my own who specializes in severe & chronic mental illness - not for sympathy, or empathy, but to bounce ideas off of & come up with a strategy.

I also have to wonder how much of this has to do with how obsessed he is over his last therapist who he’s made up this whole romantic relationship fantasy about. He was holding steady until he started seeing her, then he quickly went downhill - she saw it too. Now, when he’s good, he rarely talks about her. When he’s bad, he wants to talk about her everyday. Right now, it’s that he should have married her. I tell him he needs to get her off his mind. He says he knows, but it hurts. I think his heart is quite literally broken.

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That link was very helpful.

Maybe I’ll use it to talk to him about what his treatment team can do for him - he’s on an ACT team like the link talks about, but is not yet engaged with them due to his resistance.

The problem is I’ll have to find a gentle way to get to maybe talk about SZ because he’s still on the I’m not sick thing.

However, the article also had this in it:
While the medication helps control the symptoms and psychosis associated with schizophrenia (e.g., the delusions and hallucinations), it cannot help the person find a job, learn to be effective in social relationships, increase the individual’s coping skills, and help them learn to communicate and work well with others.

They’ve at least got to get those under control before he’ll accept the help.

I feel like I’m stuck between a rock & a hard place. The meds aren’t controlling his psychosis enough to make him receptive to therapy, and the team is saying therapy may be the only thing that controls his psychosis.

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The ACT team sound like they came up with a good plan: find out your son’s goal from him and work towards that.

It does take awhile for meds to work and for people to trust their treatment teams.

With your son, I know you wonder about a mood component because of the uneven effects of APs and so many sleepless nights. Sounds like a mood stabilizer is part of his medication now. With medication, the initial healing processes can take months and it’s usually a couple years of healing after a major psychotic episode.

I really think you are doing everything you can for your son and the team sounds excellent. The method they are using is straight from the pages of LEAP. That book also says that some people with the illness might never talk about or accept the diagnosis, but people with sz can still improve their lives when the illness is somewhat stabilized.

I see a counselor who is well-versed in schizophrenia (and in my own dx), so I am really lucky in that the counselor has always been helpful with practical steps I really could take to support my family member.

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I need to learn to be more patient I guess.

His first 3 breaks were fast & he responded to the right med so quickly. People keep telling me to give it 6 months, but it’s been 6 months - just not at this dosage.

So, maybe I need to get ready for another 6 months.

I just don’t want to settle for anything less than the best he can do, while not putting that pressure on him.
I put all the pressure on his treatment team without his knowledge - I don’t say a lot during his appointments, and never say anything negative there.

At least they know I care & I’m engaged - even if they think I’m a little over the top with it.

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I"ve been following your story for months and I have to say you are my hero in the way you persevere for your child. Seriously, you are an absolutely amazing mother. My journey is underway and I hope I can keep my momentum up in the way you have. With your strength and positive attitude, your son will have the best possible outcome. I believe that.

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@slw If I remember correctly, your son is fairly young isn’t he? I can understand so well, wanting him to not isolate and wanting him to get out and be involved in anything. I still want that for my son. What I have learned from all these years with my son is that you can’t successfully force it. Maybe the hospital can to some degree, but is he really connected to the programs there or is he just following instructions from strangers?

When my son was much younger and before he got more stabilized as he is now…he just slept, walked around the apartment building and smoked, ate, and watched TV. Then he started to write, nonsense mostly, then lists…then eventually he ventured out to AA meetings, not so much because he had an alcohol problem because he did not, but because he said he could relate to the people there and he liked hearing their stories, he rarely participated, just sat in the back and listened. Then he started going places with me, more often, we got the gym, once in awhile he goes alone but rarely. about 18 months ago he suddenly refused to go to anymore AA meetings…no rhyme or reason…he said he thought he went enough times. He had some friends there, he doesn’t realize that, I know they were friends because when he had his seizures and was hospitalized, they all showed up in his room to see how he was. None of this really matters to him, he doesn’t see them or call them.

I still hope one day he will go back again for the socialization. All he does today is go places with me…and rarely alone…very rarely. He is 33. I really wish he could meet a friend that he could be close with, I just don’t think that matters much to him, or if it does he is unwilling or unable to do what it takes to make that happen. If I were no longer in the picture he would likely go the way of my sister and stay alone and to himself unless he were forced to go out to get food or medicine or see the doctor if he could even keep that up alone.

I wish and wish for him like all of the moms here do for their kids…we only want the best and we never want to give up or settle…that is understandable. The biggest thing I have learned caring for my son is that I cannot expect my wishes and hopes and dreams for my son to be his wishes, hopes and dreams…it is just not going to happen and that doesn’t mean he is unhappy with the meager activities he does manage. We were taking our usual walk today and I asked out of the blue, “Are you happy?” and my son said, “yeah, sure!” You could never tell by his expression but I decided he said he is happy so I am going to choose to believe he is.

He doesn’t want my vision of happiness he wants his own…even tho’ it seems like no vision at all. What I see is he wants everything uncomplicated, very simple, low stress and easy to accomplish…and he is happy. So I let it be…I tend to myself and keep hoping he stumbles into another social situation he will want to stick with for awhile…all of my suggestions I make fall on deaf ears and make him feel stress so I keep them at a minimum.

I wish I could offer a viable solution but I think just trying to keep him on track with his meds and his personal hygiene, eating habits, and potential exercise is probably the most important things and then maybe having regular times that you and he can do something together like take a walk or exercise or go to the library or whatever you can share easily…it takes a good long while for these kids to acclimate to these medicine protocols, they can go up and down and back and forth for many months or even a couple of years…a long while before their brains settle down enough for them to have a unique thought of their own that is not part of a delusion.

I guess my best advice would be “patience mom” and remember that your dreams for your son may need to be shelved (at least for awhile) because his dreams may be different and not at all what you planned for and exist on a very different time table… Not to give up entirely, but to let things unfold more slowly and for lack of a better phrase, more organically…trust me I know how excruciating it is to do this but it results in more peace for both of you and that is important too…it is radical acceptance of what is and of what isn’t.

Sorry so wordy tonight, this really struck a chord in me because I feel so much the same-so often, I just don’t worry about it anymore at least not so much, but then my son just turned 33…I’ve been at this a long time.

Hugs my friend.

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My son is 27, 28 in a few months.

I let things unfold as he saw fit for almost 10 years - we’re 12 years or a little better into this illness, although the last year to a year and half have been the worst of it.

Yesterday, I put a little pressure on him about seeing the case manager, and got rewarded with him waking up me up at 2:30 AM because he had bad dreams about me –
I told him I didn’t love him anymore because he was infertile (a new thought of his).
And, that I didn’t love him so I took him to a sewer to live.
So, he spent most of the night laying in my bed with me holding his hand & trying to get both of us back to sleep and him saying now & then that he was sure he has cancer (he has recurring thoughts that he has a fatal disease.)

He went back to his bed at about 5:30, and I maybe slept off & on until about 8:30, and I’m getting ready to go check on him.

He did agree that I could call & make an appt for him to talk to the case manager tomorrow, but I don’t know if I will now or not. I think I’m going to take things back down to a pressure free atmosphere & I’ll just keep trying to get him to help me do things around the house & get out somewhere most days, even if it’s just to ride around a little.

My biggest worry is that the Invega Sustenna isn’t working for him at all - not that it’ll take six months to see improvement.

He’s on a higher dosage than ever, and he’s usually pretty stable on any amount at this point - mid way through the 28 days - but he’s not this time.

And, I like the reminder that my dreams are not his dreams. I don’t really have any dreams or plans for him other than he’s happy & can function a little better than he is now, but I’m slapped in the face almost daily that no matter what I’d like him to do, he may not see it the same way.

Last night, I also told him he didn’t have to be scared. He replied, but I’m scared all the time.
Somehow, I can’t translate that into he needs help with a mental illness in a way that he can accept or believe. He says no amount of meds have ever changed that, and he doesn’t think anything else can either.

I feel like one day, something will work, and he’ll wake up from this nightmare & be so upset that he’s missed out on so much of life.

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Or…he will wake up from this nightmare and just be incredibly grateful that it is over. You are a really good Mom. Thank you for sharing.

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slw, when you share the things your son says to you, I feel as though I am hearing my own son speaking. I know “I’m scared all the time” is how my son feels even though he isn’t able to voice it to me. Thank you for sharing his words.

I do know that the CBT is helping my son. He’s never spoken about it, I just see the results. He’s doing some things that he hasn’t done for years. He’s 35, we know his psychosis was present at age 29. One of the reasons it is helping is probably because he’s the one that pursued doing it so he could accomplish the things he wants to do.

We are beginning to hope that maybe he won’t be one of the cases that gets progressively worse his entire life.

NAMI folk always encourage the caregiver-parents to get counseling. Some of the parents i know believe that getting their own counseling was the best thing they did.

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I’ve got two people picked out.
One is a psychologist who my son saw a few years ago, so she’d be a little familar with him.
The other is a counselor who’s closer & works with people with severe mental illnesses plus offers caregiver support.

To be honest, I’m not really looking for support - I’m looking for someone to bounce ideas off of & to give me another opinion. I don’t need sympathy, or for someone to tell me I’m doing a good job or I need to take care of myself - I need good advise and a plan that will work.

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My counselor helped with practical steps. I took in a list of doctors the insurance company gave me and counselor crossed off all the doctors who are not familiar with schizophrenia or not appropriate for some other reason.

Also, rest assured, you are doing a good job:)

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I understand. The first thing we did after the leaders of our Family to Family class convinced us our son possibly had scz, was to consult a psychiatrist that specialized in severe mental illnesses. We wanted guidance and to bounce stuff off someone with a lot of experience. We took the advice we received quite seriously.

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My son’s current psychiatrist is dedicated to the ACT team - I believe they actually call it STAR ICT.
I’m not sure what STAR stands for, but ICT is intensive community treatment.

So she only sees people with severe mental illnesses that need intensive, ongoing support.
I like her. She’s very low key & spends a lot of time with us each visit, but I’m not sure if she’s aggressive enough.

This is with our county mental health services department.

We are lucky enough that our county is next to the city & they have a teaching hospital there. Part of their psychiatric department includes doctors who also specialize in schizophrenia, so we’re not without other options.

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We have to gather all the information we can, sort it out and figure out what applies best for our family member, THEN try to figure out how to get them to comply with our plan. Its tricky, we know them, the doctors know things, but no one really knows what is going to work best in each situation. And the fall back plan is always “let time pass” - and in this business they measure time in years and decades. Sigh.

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Right now, I’m all over them any time I see a slip because within 4 months, he was in the hospital twice because he would go into the hospital, they would increase meds & stabilize him, then he would come out, the outpatient team would make adjustments & he would go downhill quickly & end up back in the hospital.

The last time, he had stopped sleeping, 4 days later he got his shot, he still didn’t sleep for 4 more days, and he finally got bad they did an involuntary hold at the ER. He literally slept less than 16 hours in 8 days. I suspect, the problem started a couple days earlier because I never saw him sleep - he just told me he was.

After his release this time (they had added 4 mg/day of Risperdal to his Invega shot plus a mood stabilizer), he was great until it came time for the next shot. They upped his shot to the max, took away the Risperdal & tripled the mood stabilizer.

5 days later, his mood was less positive, he was sleeping less, the delusions were up, he was back to hearing & seeing things. I’m guessing it was the Risperdal clearing his system because it was like someone flipped a switch.

Now, I’m hoping he can get through the next 8 days, get his shot, then make it then next 4/5 days until it kicks in. At least the nurse changed his appointment so he’s getting the shot 4 days early - I couldn’t get through to the receptionist that 4 days late was not a good idea.

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We had several years of trial and error - all error - which resulted in several hospitalizations each year, repeated noncompliance with meds, several apartment moves and threatened evictions, police interactions, a couple of overnights at the jail, 2 rounds in mental health court, frequent aggressive language and actions within the home, and stays at 3 different kinds of assisted living.

Since switching to clozapine, my son has remained med compliant; remained in the same location; had only 1 brief hospital visit; no longer has aggressive outbursts. My son does have off days, still has many delusions, isolates and turns down suggestions of activities he might find enjoyable outside the home, has little to no insight into his illness, and refuses to see a therapist.

I think without insight, meds can only go so far.

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I think I’ve got different expectations because his illness has been a little different.

He had 3 fairly brief psychotic breaks, recovered from 2 with no antipsychotics since we chose to not hospitalize him, and then remained very stable by the standards I have today from the age of 18 until he was 26 when minor, infrequent breakthrough symptoms & lots of social anxiety turned into more extreme & pervasive symptoms.

Until that time, he also had complete insight into everything except when he would hear people say things they didn’t say. He knew he could get paranoid & delusional. If he went full psychotic, he thought everything was real, but as soon as a med change kicked him out of it, he started to doubt, then recognized it for what it was.

This lack of insight is a real bummer to put it mildly. It makes absolutely everything harder.

I’d even like to see him try Clozapine, but I don’t know how we would explain the med switch to him in a way he would accept since he still thinks nothing, but the anxiety, is wrong with him. Right now, he accepts all the meds because he says they do nothing to him either way. At least, he’s not having weird side effects, so that’s something.

Even though he accepts the shot, he doesn’t like it - he’s got a delusion that they’re giving it to him on purpose to make him sterile. That comes & goes, but I feel like I’m on borrowed time with his med compliance.

Now that I think about it, maybe that’s why I feel like I’m racing against time with everything because he was so stable for so long, then got so very sick so very quickly. I guess I’m scared of what’s next - not that we ever know what’s next in life. And, I definitely don’t like not being able to control the situation - I love being in control, even if it’s just the illusion of control.

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I will do what I believe works for my son’s situation until I see a need to change it. I think you are doing the same.

Always fighting the good fight.