Schizophrenia help please

[Aquamarine25]

Ok so my lovely clever DD25 developed psychosis last year and was hospitalised for not believing she was ill and therefore wouldnt take medication. Released after a month and now on CTO so accepts injection as will end up hospitalised otherwise. Aripiprazole has not worked and has recently started on another anti psychotic. Been told by psych that dx is now schizophrenia. This has devastated us all. She doesnt talk about her illness and if you met her you wouldnt really know she was ill. Please can anyone give us hope with this diagnosis, we are so worried that she wont be able to live any sort of normal life. Would love to hear from any MH professionals or lived experience. Thank you

[Pootles34]

Hello, sorry to hear this - it's a lot to take in. My close family member has schizophrenia, was diagnosed about 20 ish years ago. They are doing really well, take their meds etc., they have a spouse and a full time job, live in a nice house etc. She hasn't had kids as there are concerns about coming off the meds in pregnancy etc., but otherwise she's very happy and with a very full life.

It doesn't really affect her life otherwise tbh.

[Aquamarine25]

Many thanks Pootles, this is exactly what I need to hear as have been stressed beyond belief with the worry. Can I ask if your family member tells people her diagnosis?

[Pootles34]

Hm I'm actually not sure - I think she probably would if it came up in conversation?

[Moreteaandchocolate]

I have a friend with schizophrenia- she’s on the injections after being hospitalised and now seems to be improving. It is a treatable illness and the injections work well to avoid issues with not taking the medication. Would you mind me asking which medication your dd takes? My friend has Aripiprazole, which helps a lot but isn’t fully effective.

[Aquamarine25]

Hi Moretea, Aripiprazole did not work for her at all and has now been changed to Risperidone (?sp?. )She is very quiet on what she is going through and I feel heartbroken that she will not use her degree or live a life without constant medical input. I am trying to be positive in her company but cry every time I think about it.

[XDownwiththissortofthingX]

Just wanted to say OP that it is indeed perfectly possible to lead a "normal", "full", and "healthy" life as someone who has a diagnosis of Schizophrenia.

It really depends on how effective your medication is in preventing psychosis and delusional/illusionary phenomenon, how prone the individual is to experiencing these in the first place, and the presence or otherwise of other comorbid symptoms, but it's not the case that it is a debilitating or life-limiting illness in every single case.

Since it's a very recent diagnosis and your DD has presumably just encountered their first ever episode of psychosis, it's unlikely you will have much of an idea for a good while just how affected by her illness she is likely to be on an ongoing basis, but there are plenty of reading resources out there that feature testimony from individuals with lived-experience, so perhaps you could ask whoever is overseeing her care to point you toward some family-orientated materials?

Hopefully once DD finds the correct anti-psychotic that is most effective for her her mental state will settle down. I know several people who are on fortnightly or monthly injection, and for the most part it works fairly well.

[Aquamarine25]

Many thanks for your input XDown. Yes this was First Episode Psychosis around 6 months ago. We had hoped that meds would work and she would hopefully be able to reduce meds but Im not sure if can reduce meds with schizophrenia diagnosis?Unfortunately she is constantly tired and stuggling to get out if bed but this may be meds causing tiredness and may settle?
She doesnt appear too distressed and does sometimes socialise.

[Moreteaandchocolate]

@Aquamarine25

Hi Moretea, Aripiprazole did not work for her at all and has now been changed to Risperidone (?sp?. )She is very quiet on what she is going through and I feel heartbroken that she will not use her degree or live a life without constant medical input. I am trying to be positive in her company but cry every time I think about it.

Thank you. Sending lots of positive thoughts and I’m sure your dd will be able to live a full and happy life once her medication is stabilised.

[Aquamarine25]

Many thanks for your kind thoughts Moretea

[Unabletomitigate]

This is something you might not have thought about- the effect that diet has on brain health.

[XDownwiththissortofthingX]

@Aquamarine25

Many thanks for your input XDown. Yes this was First Episode Psychosis around 6 months ago. We had hoped that meds would work and she would hopefully be able to reduce meds but Im not sure if can reduce meds with schizophrenia diagnosis?Unfortunately she is constantly tired and stuggling to get out if bed but this may be meds causing tiredness and may settle?
She doesnt appear too distressed and does sometimes socialise.

If DD is under CTO then it's a case of being a gradual process of finding a drug and dosage that keeps her as well as possible, and from then on an ongoing discussion about medication. It's common for the first attempts at a regular medication to produce symptoms like lethargy and tiredness, and also be less than effective at managing symptoms. It really is a case of trial and error until she can find a drug and dosage that works for her, and hopefully produces only minimal or manageable side-effects.

Truthfully, there are very few people of DD's age with her diagnosis who can withdraw from medication completely and remain stable and well for any length of time. Consultants will be extremely reluctant to sanction it even if there does come a point whereby she is no longer under CTO. The only people I am aware of, and I am not personally familiar with any, who have been able to come off medication entirely are much older people with years and years of insight into their own mental state, and even then they tend to only do so full in the knowledge that it is entirely likely they will experience symptoms. Environmental stresses, and personal behaviours and habits can be a factor in triggering episodes, and I think that's why it's perhaps only people in very exceptional circumstances who seem to be able to cope well enough without medicating.

I know that is probably not what you want to hear, but the opposite side of that is that I do know personally a number of people who experienced psychosis around the age of your DD or even younger, who then went on to find a medication that did work to keep them well, to the point whereby they've yet to experience any further episodes of similar severity. I know a few mental health professionals and people who are senior managers in mental health-related third sector organisations who themselves have a diagnosis and have medicated their entire lives. The point is, the thought of having to remain on medication for your entire life is never usually welcomed, but in reality it is not necessarily a bar to having a successful and fulfilling life and career.

The people I know who really struggle are the ones who I would describe as being either unwilling to engage with doctors beyond the bare minimum, or are in the habit of forgetting/refusing to medicate and end up in and out of hospital. If services where you are are anything like those in my area, then the more she resists interaction and the more reluctant she is regarding medication, then it's likely the process will just take longer to reach any satisfactory place, and she'll likely encounter doctors who are less willing to consider her point of view if she's seen as "uncoopertative". That's not to say it's best to just shut up and accept whatever the doctors suggest, there should always be a place for patient input, but in the particular case of people who are freshly diagnosed and might be a bit sceptical of that diagnosis, in my experience being recalcitrant and/or perhaps being a bit lax with taking your meds usually just results in relapse and a longer route to finding a routine that actually works. Usually it's a case of working closely with the doctors for the first while to actually get to a place where everyone is happy that you are stable and well, and then and only then do the discussions about "what next?" begin.

[Namechangedasouting987]

Hi OP my DB had his first psychotic episode aged 19 at uni. He was very ill for a good while and was eventually sectioned and in residential mental hospital for a while.
His diagnosis was changed to schizoid affective disorder as opposed to schizophrenia.
I am not going to lie that the first 10 years or so were tough especially for my mother, who was trying to advocate for him and being turned away as he was over 18.
Anyway long story short he is now 45, married with 2 kids and has a full time job.
He has wfh for all his career (before it became a thing!) And his employer has been excellent with accomodations for him over the last 15 years.
He dropped out of uni twice but eventually got his degree through the OU.
There have been set backs mainly when they had to go through IVF (the drugs used affected his fertitly) but he has been stable for a good 15 years now
He is on lifetime medication and has had to make some adaptations to his lifestyle accordingly..he needs a lot of sleep and struggles with early mornings. His wife carries a lot of the stress of the family as it's a major trigger but on the other hand he is very calm and a stable influence on her (remarkably!). Once stable he found a course of CBT really helped him.
His is a very positive story. I guess lifetime medication is a scary thing, and it's tough to find the right drugs at the start. Changing drugs can also be very difficult.
I wish you and your DD all the best

[Aquamarine25]

Unable, thanks I will look into that.
XDown thanks it is positive that you know of people with a diagnosis that can hold down a good job. Unfortunately DD is refusing to believe that she is ill, hence the CTO. Good that its a monthly depot.Fingers crossed, meds start to work and she can gain some insight. The whole episode is really stressful and upsetting for us all and no one will even give us a hint on expected outcome. Suppose, they dont know and therefore wont give any idea of timeline.

[Aquamarine25]

Many thanks Namechange, very positive story about your DB. I would love for my DD to have a similar outcome. She has a good degree but became ill before using it for work. I really dont care what she eventually does for a living I just want her to be able to live independantly and be happy.

[Ezzee]

OP I have worked with a quite a few people diagnosed with schizophrenia, all of them I met through their university and all of them are now working in the industries that they want or have gone on to academia.
The one thing they have all stated was that the first few years was so hard, acceptance doesn't come easily and they had all been back into hospital through avoidance for meds and diagnosis, what they all have in common was the need for support and once that was in place they shone.
But there is help, support and hope, the people I have worked with have been amazing people with bright happy futures but it takes time.
I wish you DD all the happiness and hopefully will realise this is not as bleak as she imagines.

[Aquamarine25]

Many thanks Ezzee for sharing stories of hope and good wishes. The psych was really dismissive and seemed to provide worst case scenarios i.e. could be treatment resistant and likely to be re hospitalised, lifelong illness etc.while we sat looking shell shocked and left hospital in tears.
So good to know that young people are not 'written off' and there is hope for a decent outcome.
Considering it affects 1 in 100, I probably know people with this condition and am just not aware.

[kaiadeluded]

Hi @Aquamarine25 I'm 47 and have Schizoaffective disorder mixed type which is similar to schizophrenia mixed with bipolar.
I take Aripiprazole 30mg but do get some breakthrough symptoms of psychosis when I'm stressed / tired. Plus I get quite paranoid a lot.

I first had a diagnosed psychosis at 36 but looking back I had issues since childhood. The stress of my career is probably what caused the psychotic breakdown, and I sadly lost the professional career I'd had.
I started on Risperidone and to be honest it made me feel awful and never worked on the delusions I had, whereas the Aripiprazole did.
There are lots & lots of other meds out there.

I have a part time job as a health care assistant at a hospital but I find it a struggle as I do get paranoid easily plus the negative symptoms of low motivation mean that I can get in a good routine of showering & preparing meals then I get in a low mood and everything goes downhill again.
So I applied for and got PIP, i think you should try to apply for this for your daughter.

I do live alone. My mum was very supportive but sadly passed away in September and I've been quite ill on & off since. I'm signed off at present. I do have good friends and family but they can't be there all the time obviously. I can look after myself but I won't lie I do need prompting to do things when I'm low.
I haven't got married but it's just bad luck with men & bad timing.
I would've loved to have children in my 30s even as a single woman, still hoped I would up to 42 but my drs said my meds are too toxic / I would get psychotic/ I would have social workers involved so I couldn't do that.

At present I have a psychiatrist I see 3-4 monthly, I can phone the duty nurse at the community mental health team or the out of hours crisis team for support; plus I have a support worker.

I recommend joining Reddit and finding the r/Schizoaffective subreddit as lots of ppl with schizophrenia & Schizoaffective are members from the UK, US, Canada, and Australia.
Probably the majority are from the US so may have some very different experiences.
Obviously some users are quite ill so you have to bear that in mind and don't let certain things upset you on there.
Quite a few users do experiment with illegal drugs as part of coping with their disorders which obviously is not good.
But.. they discuss various meds a lot either by their brand names or by their generic names which is useful because you get more knowledge that way. Also they discuss schizophrenia symptoms.

The overriding message of people on the sub is that it's a chronic illness and to stay well you have to stay on your meds.. much like a type 1 diabetic needs insulin.
I totally agree with this. Also to avoid drugs & alcohol, get plenty of rest, less stress as possible & eat healthy.
I feel that you should be very vague with everyone about your daughters illness, eg say it's bad depression if asked then leave it to her if she wants to elaborate but to be honest I wouldn't tell people!
There's still a huge stigma I feel. When I go on a date I might vaguely say I have 'a bit of depression & anxiety' but I'm not sharing my actual diagnosis with a man unless we plan to move in together!
I have been extremely selective about what I tell certain friends and family.
My line manager at Work knows now as I've been sent to Occupational Health & they've had to make 'reasonable adjustments' for me as it's a Disability under the Equality Act but they only thought I had depression or something when I got the job.
I think if I was your daughter I would get advice if looking for a job on disclosure.

I hope your DD starts to feel better soon.

[kaiadeluded]

Sorry that was a bit of an essay!

[Aquamarine25]

Thanks kaiadeluded for your advice. You are right that there is a lot of stigma, which is a great shame considering how many people are affected.

[BlueWhippets]

I don't have schizophrenia but I was diagnosed with it when I was 18 after a psychotic episode. I was on a CTO and had a load of different medications before getting settled on respiradone depot and then palperidone (the 4 weekly version if I remember right?). I appreciate that I don't have schizophrenia so this might be completely unhelpful but I was completely unaware of how much of a life sentence this diagnosis was delivered as. My parents had been told that I would need to live in supported care, I wouldn't have a job, go to uni or anything like that. I was totally unaware of this so I applied for uni and moved away etc but I think if I had realised how little everyone else expected from me it would have held me back. I came off medication and didn't become unwell again and then my diagnosis was revoked (and changed to bipolar and then changed to nothing which is where it currently stands).
I do need to be more mindful of my limits. I've never taken any drugs, I used to struggle with lack of sleep and stress and had a few periods where I was worried I was on the edge of another episode and treated it proactively with a low dose antipsychotic to really just help my sleep.
I know I was younger than your daughter but I feel really angry that I was given such a severe diagnosis after one episode of psychosis. Especially given how they expected so little of me from it.
I appreciate that it could have been very different and I could have gone on to have more psychotic episodes.
I hope your daughter has a path more similar to mine

[Aquamarine25]

Many thanks Blue this is also my DD first psychosis although it has lasted some months and not responded to first antipsychotic.
Schizophrenic diagnosis was totally unexpected as I have been reading everything I can about psychosis for last 6 months and many people still had psychosis diagnosis even after months of symptoms.
I am so glad that you managed to shake it off. DD has a good degree and is functioning ok atm but like your parents, we left hospital feeling as if her life would be seriously blighted. Many thanks for your good wishes.

[Aquamarine25]

Just bumping in case anyone else can offer hope/advice. DH has been a rock but today he is struggling. Have shown him the replies on here that a fulfilling life is possible for DD.
Many thanks