schizophrenia - withdrawal from antipsychotics

Hey @zebra1 ,

I'm hearing you.

I'm guessing your brother is an adult? If so, from a carer's perspective, all you can really do is speak to them with kindness and openess. Be transparent about the impact of NOT taking the medication, and feel free to share your concerns (e.g. "I've noticed that you have been a lot more talkative and full of energy. I'm concerned you may be experiencing some manic symptoms.). You can then encourage them to speak to their psych about wanting to get off the meds, and even offer to go with them and share that you want to support him. Is this something you would consider?

To be honest, I'm experiencing something similar at home. My brother-in-law is off his anti-psychotics. I can only be patient with him and share my concerns.

Please know you are not alone.

Hey @zebra1

I wanted to take a moment to welcome you to the forums. I am so glad that you felt safe enough to reach out here 💚

It really sounds like you're navigating an incredibly difficult balancing act right now. On one hand, you're seeing your brother feel more like "himself", talkative and energetic, after struggling with that heavy emotional blunting that can come with antipsychotics. On the other hand, you're carrying the weight of "waiting for the other shoe to drop" regarding a potential manic state or rebound psychosis.

That feeling of not wanting to "dob" or betray his trust is very common amongst family members; it's something I can resonate with, having been a carer previously for my sister with complex mental health conditions, and a carer currently for my partner, who lives with Schizophrenia. It is really hard when the system can sometimes feel like it only offers two speeds: total compliance or forced treatment.

It is worth acknowledging that the "blunted" feeling he experienced is a very valid reason for why many people want to cease medication. It can feel like losing your personality/identity. Recognising that might help when you talk to him, letting him know you see why he wanted a change. Although I will say that the initial burst of energy after stopping medication is a "rebound" effect. It can look like a positive mood boost, but, as you've noticed, it can escalate quickly.

Instead of going straight to the psychiatrist, have you had a chance to chat with your brother about what he wants his life to look like? Sometimes, framing it as something like "I love seeing you with more energy, but I'm a little scared of how fast things are moving. How can we make sure you stay feeling good without hitting a crisis?" can open a door to a shared plan.

I know here on SANE there are helpful fact sheets/information for families, friends and carers of those living with Schizophrenia that might be of interest to you. There is one here specifically on Schizophrenia and one for Families, friends and carers

Please remember to look after yourself! Holding this level of worry for a sibling is extremely challenging and draining. We're all here for you if you need to vent or think through the next steps 💚

@zebra1 @MatchaToad @tyme I dunno as someone with lived experience how to unravel what's blunted affect as side effect from "negative" symptoms characteristic of aspects of the condition.

For what it's worth I've come to the

understanding that a single inflexible dosage isn't necessarily appropriate or required. Through negotiation and titration I'm on a lower maintenance dose which is revised upwards when I'm becoming symptomatic. I'm resigned to never recovering the spontaneity liveliness and wit I once possessed but that's a loss I ascribe to my illness. I resent other things - obesity, sluggishness, gut and cardiovascular issues induced by the meds - but accept them to feel safer from paranoia and psychosis. Are your loved ones open to discussing these sorts of considerations?

That's so helpful to know about the dosages @Dimity . Thank you for sharing.

Thank you @tyme @Dimity and @MatchaToad for your thoughtful responses.

it helps to know that I’m not alone.

this is really helpful advice and I think I will try to talk to him tomorrow. I don’t live with him so it’s hard to keep on top of what is going on.

In regards to dosages, it seems that the psychiatrist is very resistant to decreasing the dose, as apparently he is already on quite a low dose. I think he is slightly unusual in that he has had no prior drug use in his life and seems to be very sensitive to drugs in general (he’s very skinny I don’t know if that’s a factor). The other challenge is that I’m not sure how much insight he has. I believe he disagrees with his schizophrenia diagnosis, but he will recognize that he experienced psychotic episodes, I can’t really get a clear picture of exactly what he thinks as he doesn’t tend to talk much (especially about his illness). I think he once mentioned that he thinks he has ocd or anxiety but not schizophrenia? He is also pretty resistant to getting help in general.
I want to advocate for him as much as possible, but without turning him completely against the healthcare system who are trying to help him

@zebra1 it's partly insight, partly recognising when I'm misinterpreting things and becoming a bit paranoid. I started out with a schizophrenia diagnosis which evolved into BPD then bipolar affective disorder so mood changes and behavioural changes are other things I watch for eg not sleeping is a red flag. I'm lucky enough to have a bulkbilling psychiatrist who checks in with me reasonably often and there've been times when he's recommended med changes. The last time I had a major relapse I started asking for increased meds before I was in crisis then went onto even higher doses when in hospital. It had been more than 20 years since my last psych admission, so this approach usually works fairly well. Being able to titrate back down to lower maintenance dose is very helpful for my general wellbeing.

I also use a mood & activity tracker app that's excellent for staying on top of things. It removes some of the subjectivity.

Thankyou for your interest, and for looking out for your brother. Might I also say there'll be times when you need support too, and the forums are good for that. I'm glad you found us.

@Dimity @tyme @MatchaToad Unfortunately things have escalated, my parents told me that he left this morning for work (even though he’s not rostered on on Thursdays) without his phone, wallet or shoes. He arrived in a manic state and was sent home, his boss called my parents to tell them and we don’t know where he went after that because he doesn’t have a phone. He’s currently still missing. I don’t know whether to call the police now or wait for him to come home.

In hindsight I should have tried to speak to him sooner, but I live an hour away from him and had to work.

I guess the only thing to do now is call the police? The situation just feels very hopeless, but I guess this is just what it’s gonna be like indefinitely. I doubt we’ll be able to convince him to get back on his medication so it’s looking like a hospital stay (if we even find him). We live in a major city so it’s not like I can drive the streets trying to find him. I know there’s not much that can be done now but any advice is appreciated.

Hi @zebra1 ,

That sounds really scary and overwhelming. I want you to know that you've done the best you can for your son in a really difficult situation, and none of this is your fault.

Given that his missing without essentials, I would gently encourage you to call the police (000) or your local CATT team for support. They can help get your son to safety and guide you through next steps. You don't have to navigate this alone.

Thinking of you💙

~ @Honeymoon

Oh @zebra1 how worrying. As @Honeymoon suggested police and CATT would be appropriate as he may encounter police or protective services anyway in his current state. Could you advise someone on his treating team, if you have their contact details?

My very best wishes. I'm sorry he went downhill so fast. It's possible he'll be hospitalised then placed on a community treatment order, but time will tell. I hope he turns up unscathed... and gets the help he needs.

How are you? You must be very anxious, and maybe in need of grounding exercises like breathing or distraction. Don't hesitate to reach out to a crisis service for your own support, not just your brother's.