Psychosis recovery - looking for advice and positive stories

[Lindylu74]

I posted a few weeks ago on here that my sister was diagnosed with psychosis, suddenly at 52 and out of the blue. Although she had been suffering from moderate anxiety and depression, she has never had a psychotic episode before and it came as a huge shock. Six weeks on, she is under the care of the Early Intervention Psychosis team and on 200mg of an antipsychotic. In the last week or so, she seemed to have improved a bit and although still a long way from her old self, she was less agitated and delusional. However, yesterday, she slipped back a bit and was very scared and delusional. It’s been very difficult getting her medication increased as there is currently a vacancy in the team for a psychiatrist which makes things very difficult.

Does anyone have positive experience of recovering from psychosis or a close relative recovering. What helps? What can I do to support her? I work full time but spend as much time as I can with her, just sitting with her sometimes or taking her out for a walk. Is she likely to have good days/weeks and then slip back or is that a bad sign? Jus looking for any similar experiences that might help me understand and support her.

My mum had psychosis in the 1980s when she was in her 40s. Medicine wasn’t so great then and people in and out of the medical field did not always treat patients with kindness and dignity - but they were able to get her steady enough to come home. She wasn’t able to go back to her old job but found new work in a less pressured role. She’s was great for years with the odd decline - nothing as dramatic as when she was first diagnosed. She ended up having treatment resistance, but it was just as clozapine was getting licensed - must be over 20 years ago now. She had to wait a few weeks for the licensing to go through but she hasn’t looked back. The drug has kept her much more stable. She’s become more reclusive as the years go by but she has a good social group with me and my siblings,and my Dad when he was still alive, and some close friends. I feel she couldn’t cope with the people who couldn’t cope well with her illness as the decades went on. But who knows. We learnt to accept rather than try to understand as time went on. My aunts and uncles have struggled with her never returning to who she was before she got ill but she’s had a good long life and a loving family around her and the treatment has keep working to this day - she’s in her mid 80s now.

My ex (childrens father) had this many years ago. He ended up in the psychiatric unit because he wouldn't take his medication (tablets). Now 10 years on he's a different man. Goes out to the gym, volunteer work. But his medication is now monthly injection and he's been stable for years. Good luck with your sister x

MH professional here with lots of experience of psychosis. People don’t suddenly develop schizophrenia in their 50s so you can definitely put any thoughts of that to bed. Sounds as though she had a depression that tipped over into psychosis. In my experience psychotic depression takes a long time to resolve and then for people to process what the hell happened. I’ve seen lots of people make an excellent recovery although recovery is never linear. It’s normal to have ups and downs, fits and starts. Good sleep, routines, purpose and supportive network make a huge difference to recovery. Hope that helps a bit! If early intervention team might run a group for carers to understand more I’d definitely recommend attending x

It can be very hard to accept you’re ill (and take meds) when you don’t feel if.

I had my own experience a few years ago. No psychosis but hypomania so severe I did get sectioned for a couple of weeks. My biggest worry when I was well enough to realise what had happened was that my life had imploded (it hadn’t) and I’m still dealing with some emotional fall out now. One of my siblings reacted badly - shouting and screaming and saying she needed my medical team to help her as she was struggling (of course she has her own trauma and probable mental health issues too). But everyone else in my life, especially my DH were kind and patient and always there for me. My kids have been largely impacted (they didn’t want to use the service offered to help them). My life is 99% the same.

If the delusions haven’t gone away does this mean the medication isnt quite right? Is she definitely taking it every day? I know she might say she is but that doesn’t mean she is. Yes to visiting and keeping things as calm as possible. Do you know about the POPS UK facebook page? You will get a lot of help there. Much more than the EIT will give.

This might be completely wide of the mark but has she had any trauma in her life, especially childhood? I had a psychotic episode out of the blue in my 40s and it turned out to be childhood trauma that I'd dissociated/ forced out of mind and then it came rushing back. If this is the cause (or contributing) then she'll need to treat the underlying trauma in therapy.

If it’s psychotic depression people usually make a full recovery but it might take a number of months. ECT is in fact the quickest and best treatment for it but hard to get access to. It should be considered for anyone with psychotic depression and is what I would want to have if it were me.

If she’s gone backwards after making progress I would always be suspicious that she might not be taking the medication. Very common.

Six weeks is nothing in terms of full recovery time, in my experience. Give it time.

My family member had a first episode of psychosis in late 60s. Was detained in hospital. We found the anti psychotic medication (haloperidol I think) worked quickly and the paranoia and delusions went within a week or two. However they were very flat in mood and low and disconnected for weeks and months after. The MH team then suggested reducing the medication which they did and this triggered a period of significant anxiety that was quite crippling and at times verging on delusional. They had daily visits for a while from the MH professions (this was 3 or 4 months after the initial episode). They then started them on an anti depressant (Prozac), which really improved the anxiety. They have had a small amount of talking therapy but nothing that significant. We then waited nearly a year of them being sort of stable but still quite flat. Then very, very slowly reduced the anti psychotic. After nearly another year, they finally came off this but still on the anti depressant. I would say that today (3 years on), they are essentially 'back to normal' although some things, like hobbies and activities, they've never gone back to. We have seen no repeat of the psychosis but I'd like it to be a good few years down the line before I start to feel reassured it's not going through flare back up.

I had post natal psychosis, I do also have bipolar. So as post natal I have no idea if comparable. It took me all of my maternity leave which was a year to feel ok and even then I wasn’t really quite myself. I think 18 months, sorry and I may be wide of the mark as post natal. Health visitor found me with a bread knife sat at the kitchen table about to end it. Poor woman she actually became a good friend and even came to my child’s christening. She retired and moved about 3 years after and said it was the worse incident of her entire nursing career. I was an in patient in a Mother and Baby unit for 3 months, then had daily support and ongoing support for a year.