Support thread for severe mental illness

[Serencwtch]

Have just been discharged following section 2 admission for psychosis related to bipolar.

I thought I'd start a support thread for those of us living and functioning best we can with the more severe mental health diagnoses- bipolar I, schizophrenia, schizo-affective etc & the challenges that come with that.

I know I'm not the only one that juggles family, work, normal life whilst living with the most serious mental illnesses.

Thanks all for talking about the different meds and weight gain, my GP just thought they would all be the same but maybe he's not an expert in all the meds, I can maybe suggest these and / or ask for a medication review as I'm not sure if he can change them.

I like walking too, glad to hear it helped you. I need to try more, this weather is not conducive to it. I struggle with motivation sometimes.

Thinking of you xx

How much support do you get from the NHS?

Am under Community mental health recovery service (CMHRS) in my area they no longer allocate a CPN/care co-ordinator so I would only be able to speak to someone if I called the duty worker. Other than that 6 monthly reviews with consultant.

Thanks, yes it is a while back when I had one. I just see the GP now but think he can ask them if he needs to review meds.

Is that long term then? I'm wondering if it could be helpful as well, not sure.

It used to be the norm a few years back. They were then called CMHT. The criteria for CMHRS is much much higher.
I've just been discharged from hospital where I was under section but even with that the support is limited probably for 6 months, after that psych reviews only.

Some GPs have access to a psychiatrist & mental health nurse that fills the gap for people no longer meeting CMHRS criteria. I found that more helpful to be honest as I saw the same person & it was at GP surgery. In my area it's called GPimhs but not all areas will have it/call it something else. Definitely worth asking.

The only times I have had a cc/cpn has been when I have been under a specialist service. I was under the early intervention team when I was diagnosed and saw a cpn for 3 years. After this I was under the cmht and saw a psychiatrist but no one else.
I had a few years where I was only under the cmht for one 3 month period for a medication review. Saw a psychiatrist twice then discharged back to GP
Then I fell pregnant with my daughter and was under the perinatal team with a cc from 32 weeks pregnant until I went into hospital at 10 months post partum.
I was discharged at 13 months pp so I was discharged to the cmht instead of the perinatal team as they only went up to 12 months. My discharge was delayed by 2 weeks as I was on the urgent list for a cc. I saw him once then he left. 3 months later I saw another person once then she left. 3 months later I saw a woman who came every month for 3 months before i moved but most of the appointment was taken up reminding her of my name and diagnosis then a couple of questions about suicide risk and then she left. When I moved I was assigned a cpn and was meant to see him every 2 weeks. I saw him once in September 2022 and he never came back!

Since January I have started seeing the SMI nurse at my GP surgery every 2-3 months rather than once a year just to have slightly more frequent check in on my mood as I find it hard to advocate for my needs so this is a middle ground. My daughters paediatrician has contacted her hv to see what support she can give me and we have started some counselling sessions. Support from the cmht is 4monthly medication reviews with the psychiatrist. It was recommended when I moved that I need psychology support after having 18 months of VIG therapy with the infant parenting service but that never materialises. I think as the letter recommending it was sent to the cc that did a vanish act.

The problem I have is when I'm in a position to advocate for more support I'm not in need of the extra support. When things are rubbish and I need that support I'm not in a position to push for it.

I'm under CMHT but have a keyworker and a supposed care coordinator (who I don't see). I think it's because I'm on clozapine, and also because when I'm unwell I don't approach them because I'm worried they will hurt me.

OK thanks, yes agree that sound more helpful. Just spoke with someone at the primary care liaison service and they said my previous psychiatrist has left. He had previously told me would not need referred back and could see him straightaway but seems things have changed now.

The mental health people might hurt you? I know the feeling, I don't trust them either when unwell. They take away my pain meds which I don't like either.

Yes, definitely! I'm sorry they take away your pain meds, that's rubbish!

When I first saw them, I had psychosis and they asked about it and I thought it was them, they were doing it (following etc) as they seemed to know all about it and clammed up and refused to talk to them. They had to talk to my husband.

So, I do understand what you mean. I guess we need to try and trust them though. they kept changing around too which I didn't like. Kind thoughts

Thanks, I have had some similar stuff in the past, with the people coming and going. I saw a health visitor for counselling after birth of DS1 which was quite helpful and the GP helped with meds then (PND)

I don't like the staff changing all the time, I had this one lady turn up once announced she was the new care co, and she was like a motivational speaker. "You can't help having mental illness but you can help how you deal with it!" type thing as well, when I still had psychosis, she really scared me!
All these things she was going to do with me, then next week she didn't turn up and I heard she had gone back to London!

Sometimes, it can feel like it makes it worse rather than better. I like the idea of the SMI nurse, will ask about that. Someone who might actually know you a bit and you don't have to start with from scratch.

I know what you mean about needing it more at times when you can't ask though. Sometimes DH has had to do that.

I thought it was a load of nonsense at first as the first time she did the review it was a long list of family history and having to fill out 3 identical forms about my alcohol intake. It was only a few months after the cc did a vanishing act and I was hoping someone would turn up. I had my second one in January after repeating the family history and same 3 alcohol questions I spoke about feeling a bit lost and not knowing where to turn when things slide but not sufficient to be reaching out for support. We had a chat about life and balancing it and MH and offered me more regular catch up. I had the first this week and it was helpful just to have a place to voice all the balancing of my mood. It was going slightly high as I was coming off lithium and doing adjustments to help mitigating that.

Yes it sounds helpful. I will ask about it thanks.

About the criteria for the mental health team / new service. I was given a 'relapse plan' for when to get in touch with them to see them again, does that not apply now I wonder.

Hey! I don't have schizophrenia. I have depression, ocd, adhd, anxiety and panic disorder 🤦‍♀️ I'm being treated as an outpatient recieving ECT twice a week just now and on fluoxetine 60mg. I struggle with my mood and use artificial happiness such as cocodomol. I don't seem to develop happiness/excitement on its on. I have a good life, a loving dh and 4 kids. Has anyone found a combination medication with fluoxetine that works? I've tried the majority of everything apart from mood stabilisers/lithium etc. And never had a combination treatment with meds. Any advice?

Hi, I am also on co-codomol for pain and I think I use it for depression as well to be honest but it does help the pain as well.

I'm on olanzapine with fluoxetine and I understand this combination is known as 'symbyax' in USA there are some reviews online, often used for bipolar I think. I'm on 40mg fluoxetine and 5mg olanzapine for the last 12 yrs.

How is the ECT going? Hope it is OK x

I had treatment resistant depression after having my daughter. I was on quetiapine and mirtazapine at the time. They introduced lithium which at high doses (blood levels of 0.9 - therapeutic range is 0.4-1.0) got my mood off the floor and moving in the right direction. They also added lamotrigine which I never thought did much. Had the lithium not improved my mood my psychiatrist was discussing ect as the next option

Prior to this I had been on quetiapine and varying combinations of mirtazapine, sertraline and citalopram. I am very sensitive to antidepressants as they send me manic so have to have quetiapine too.

Generally speaking quetiapine is usually good enough on its own to act as an antidepressant for me.

I would do some reading around lithium, lamotrigine and quetiapine if I was you. All three can complement antidepressants to help with low mood when antidepressants alone don't help

Thank you! I'm not sure why they skipped lithium etc and went right for ECT. I'm due to have session 5 on Tuesday. I think I've been prescribed quetipine in the past but didn't take it. I've had no issues with the fluoxetine but feel like I need something to boost its effect xx

Hello everyone. This is the thread for me.

I am currently an inpatient, on a section 3, for psychosis. It took me 8 weeks before I would even discuss the possibility that I might have psychosis but I'm feeling more accepting of it now. I was being given meds forcefully for a while but now I have an olanzapine depot injection every 2 weeks.

I have been sectioned before a few times, but always for my OCD/emetophobia. This is my first (and I pray only) episode of psychosis which is likely to have been caused by a severe stressful period in December.

Like @MarketForces I too have a much smaller life now.

Stay strong!. Inpatient admissions are tough & can be very challenging places.
It can feel that the world becomes very small but in a way you appreciate the small things more.

I'm sorry you're inpatient, hugs. I hope you recover soon and can get home soon. I tend to average a section every 1-2 years for psychosis, it's really difficult to get through.

@Zimrun I have only ever had one episode of psychosis triggered partially by a severe lack of sleep when my child was a baby.

Take care of yourself, I have a very self imposed routine in my life now especially with tiredness which is a major trigger for me. I weigh up every situation and it’s tiring but safer.

I did a lot of drawing and reading poetry when in hospital. I find reading novels it’s requires too much concentration.