EUPD / schizophrenia diagnosis

[houserenohelp]

Hi everyone

After some advice really DH has been diagnosed with EUPD after a previous diagnosis of schizophrenia due to on going angry voice hearing.

I'm after some advice really how do I know what is EUPD and just him being awkward? what would help etc and how can I help.
Hoping t hear from others with experience of either Schizophrenia or EUPD

Hi, I am currently on the path to diagnosis with EUPD - it is a very difficult illness. I don't have any advice but wanted to give you a hand hold and a little bump to your thread hoping someone can help!

@TurtleTriplets thank you! <3

Anyone else ?

I have a diagnosis of cyclothymia, EUPD, extreme anxiety disorder and depression. I’m currently taking quietapine 50mg twice a day, citalopram 40mg then diazepam and propranolol PRN. I haven’t managed to access therapy yet as waiting lists are so long BUT in the 6 mo this I’ve been medicated I feel a lot better than I was.

Ive ended up feeling numb a lot of the time but that’s preferable to meltdowns, mania etc. Although it does still happen - it just isn’t as “bad” as before it happens much less frequently which is good. I was finding it incredibly hard to regulate my emotions before, and was self harming with suicidal ideation.

I still have intrusive thoughts and the urge to harm when having what I call a meltdown but I talk to a crisis team and have a plan written down for when I feel that way. It’s mainly distraction and mindfulness stuff - sometimes it works, sometimes it doesn’t which is when I need my meds tweaking.

I find it very difficult to concentrate on things when I’m in meltdown mode and don’t often do things like self care so then rely on others to make sure I eat, rest in bed ( mania times I have zero sleep ) etc. I have also got several chronic physical health conditions to manage as well so it’s all a balancing act!

At the moment I feel overwhelmed as obviously it’s been a very very busy few weeks with Christmas etc, I’ve been supporting my daughter through a break up and my mum is very poorly and I can feel myself heading towards something. However, without my meds I would be even worse off and god knows what I’d be doing to myself to cope so I’m very grateful for them. They don’t work for everyone - the first medication I was put on sent me loopy and had a lot of awful physical asymptomatic but for now I’m settled as I can be on the meds I mentioned above.

I have a very supportive and understanding DP who lets me ramble on and is there for me - as well as great family and friends. That too, in conjunction with the medication, has literally saved me. It’s so difficult to be mentally ill but I also think it’s incredibly difficult for those around us who have to deal with the endless cycle of upset. Make sure you have support yourself OP and make sure you’re giving yourself time to recharge and self care! X

Feel free to PM me if you want to chat more OP btw 💐

Oh! Sorry to post again but the MIND website has some brilliant resources on EUPD and other MH conditions. I learnt a lot from that about both EUPD and cyclothymia ( a type of bipolar )

I'm a MH nurse. EUPD and schizophrenia are very different diagnoses, and not mutually exclusive, so is it EUPD AND schizophrenia or EUPD or schizophrenia? What treatment is his treatment team suggesting? Is he on any medication? Does he see a CPN?
Sorry for all the questions. It's just that it's pretty unusual to move from a diagnosis of schizophrenia to a PD diagnosis. The level of psychosis required to meet the diagnosis of schizophrenia is such the difference between that and PD "pseudo psychosis" is really obvious to a mh professional, even if superficially they look the same. Who made the original diagnosis?

hi thanks for the replies

@JennieTheZebra no CPN yet we have recently moved and so are waiting as the transfer wasn't good. Hospital admission meant he's been reviewed again, his last admission to start clozapine Schizophrenia and schizo affective disorder were discussed I think mainly because they are the criteria for clozaril?
Last admission before we moved EUPD was mentioned and since Christmas admission they are saying they think thats the case and not schizophrenia. I am struggling to know what to do tbh because the voice is overwhelming him.

he is:
lacking personal care and needing reminding etc
looking physically ill and exhausted
sleeping a lot due to clozaril
Not interested in anything
feels numb
Cant explain how he feels
Has C-PTSD as well although he says that just because he has military background he's also had alot of family based trauma

At the moment he has only very minimally self harmed but hadn't previously for at least a year.
Then he cut his arms badly, pulled stitches out etc and when harming it was like he wasn't there. The voice totally took control.

Reading about EUPD he doesn't really have any manic phases, mood swings etc sometimes he gets angry but thats more when we are both worn down from him being unwell. He's very particular around the house etc but also pretty lazy and isn't keen on doing things.

@StewPots thanks for your replies and openness! Nic to hear from someone who gets it. Friends ask how I am etc but its not the same. I have a close friend for support and family near by but there's only so much I can divulge

@houserenohelp
There’s a lot to unpick there…
The first thing to understand is that the “voices” in EUPD/cPTSD, unlike in schizophrenia, do not result from psychosis. Voice hearing in EUPD happens because there is overwhelming and unbearable emotion compounded with an unstable sense of self that leads to internal “splitting” which is then experienced as external. If there is also trauma present then flashbacks/internalisation of abuse can make this worse. The overwhelming emotion/loss of sense of self is very difficult to “sit” with; in effect the body is in a constant state of fight/flight/freeze which causes dissociation and self harm. As a result, the primary treatments for EUPD are distress tolerance focused (mainly DBT) with medication (usually quetiapine) only for symptom relief. Crises have to be learnt to be self managed by learning “skills”. If he can learn these skills his self care/ability to cope should improve.
All of this presumes that EUPD is the right diagnosis. If he’s being treated with clozapine then he’s presenting as extremely unwell and has tried multiple other antipsychotics unsuccessfully. In terms of the schizophrenia diagnosis, in my trust at least, the main criterion for clozapine is “treatment resistant psychosis” but all trusts are slightly different. It might be that the antipsychotic s are aren’t working because he’s not psychotic. It might be that he has psychosis and EUPD. It might be that EUPD is completely wrong. I would try and have a good conversation with his psychiatrist to see where everyone stands. The “right” diagnosis is a useful place to start in MH as the treatment protocols vary so much.

@houserenohelp I’m glad you have someone to lean on, even if you can’t tell them much.

And no worries - the more open ( those of us who feel able to be ) are about MH, the hope is the more it de-stigmatises the many different types of mental illnesses there are and the more we open up signposting to resources then the more people start to access support. Granted it’s difficult under the current pressures but that’s why I’ve turned to a charity like MIND and a local one to me that does crisis support. I also have a support worker although it’s hard to get hold of them sometimes but I understand.

I find that my EUPD causes me to catastrophise a lot ( it’s worse than when I used to do it just because of my extreme anxiety disorder ) so the slightest change or trigger or thought can cause a steamroller of negative emotions. It’s hard to explain how I’m feeling to others in that moment because honestly? I don’t know myself… it could be I’ve decided that I’ve had enough and want to throw myself in front of a car, could be I want to cut myself or it could be that I just want to hide under a duvet to cry and cry and never stop. Depends what the trigger / circumstances were that started it off. If coupled in with a manic phase it’s even worse!

Thanks both

Self management is something we need to work on alot

Triggers also we can't pick out any or they aren't obvious

Yes the constant state of flight or fight is definitely true. He is constantly on edge

www.helpguide.org/articles/mental-disorders/borderline-personality-disorder.htm

This is a really good info page about EUPD or BPD as it’s also known.

And yes agree with @JennieTheZebra about voices and coping skills. I’ve learnt so much about how to self care and recognise signs I’m becoming unstable etc. BUT the game changer has been quietapine for me. I’m due to have a review next week and because I’m feeling extremely overwhelmed right now I may need a bit of extra support meds wise plus may also need pushing up the list a bit but who knows? I’m just taking it a day at a time or sometimes a minute at a time when I’m feeling unwell.

@StewPots we've been on quietapine before it didn't work unfortunately tried so many meds

He just says nothing works when I ask about coping. I dont know if hes being awkward or nothing does feel like it helps

@houserenohelp ahhh ok got you. There’s a few antipsychotics out there and sometimes it’s just case of seeing what works and what doesn’t. I hope you both get support and some sort of relief soon 💗

I presume he’s tried a good range of antidepressants? Some of the “back of the cupboard” antidepressants (eg nortriptyline or phenelzine) can work well if this is trauma induced depression with psychotic features.
The other suggestion worth bringing up with his team is ECT. I know it sounds scary but I’ve seen ECT work wonders for people.
Of course, working on the self management skills is always worth encouraging too, especially if he feels a bit “stuck”.

He just says nothing works when I ask about coping. I dont know if hes being awkward or nothing does feel like it helps

That sounds like the lazy streak coming out. Like with the house when he wants things a certain way but wants you to be the one to do it. Some people can be like this with MH. They want things to be better, but they don't want to use self care or coping strategies because it's hard work, instead they want to lean on someone else excessively for emotional support to make things better or they want a pill to magically fix it for them.

Don't forget your own needs in all this. Just because he needs or wants something doesn't make you duty bound to provide it or mean you're able to provide it. You can't pour from an empty cup so prioritize yourself as much (more so, really, because you're the only one living your life) as you prioritize him. You're not a support worker. Remember that when you're wondering what's him being awkward and what's illness. If you can't accommodate it, it doesn't matter what the cause is. Though I appreciate that sometimes you can accommodate something and are choosing whether you want to based on where it's coming from.

Are you his carer? If you are it's best to acknowledge that and to also acknowledge your own support needs due to being a carer, looking to get those needs met. There are various carer's organisations out there offering help, advice and support.

yes I'm his carer. We have discussed ECT at the hospital and I mentioned it to the crisis team as he's had it before but not sure if its only a inpatient treatment.

He's had a few different antidepressants but def asking about trying others

He can have ECT as an outpatient as long as he's willing/able to consent and you/he make sure he's nil by mouth from the night before. Has it worked before then?
@BlueSkyAndButterflies is right though. A key part of recovery is willingness to engage and it can be so frustrating/exhausting for a carer when that doesn't appear to be happening. Look after yourself, my love, and make sure you take some time for you.

He does engage with teams etc takes his meds etc.
He had ECT before we met and he said although temporary there was some relief. He's not had it since the voice has been so bad. I will push for it as it was mentioned in hospital.

Thanks I am looking after myself best I can :) just nice to have people to talk to

I do not have experience of this, but lived with my late OH who suffered from anxiety and depression and I know that you too need a hand hold as the person who cares for him. I did it all willingly but it is good to know that people appreciate what you are doing, and what you are going through.

Over the years, I have worked with a few people who were originally diagnosed with Schizophrenia, but then had their diagnosis changed to EUPD. It is more common than people realise and needs a Psychiatrist to make the new diagnosis. Much more is known about EUPD now. There was, and to a degree, still is, a stigma attached to the diagnosis, and people with EUPD have been excluded from services and I am sorry to say, not treated kindly by some mental health service practitioners. Times are changing and there is now more understanding about EUPD and much more kindness and support for people. As there should be, because EUPD usually comes from a place of deep childhood trauma.

The treatments I have personally seen people do well with are DBT treatment and attendance at a personality disorder service, for group therapy, over a period of years.

Your DH is lucky to have you by his side. I hope you can find some support for yourself, too.