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.

Hi everyone, bipolar here. Those of you that have found a medication that works…. Did it help your energy levels too? Currently struggling with this.

I have been on quetiapine for 12 years and don't find it that sedating anymore or if I do it's not my new normal. I'm on the extended release which helps but i was accidentally on the standard release taking it all at once as i thought it was the extended release for over a year without realising!

When I was being treated for my severe pnd I ended up on a high dose of the quetiapine as whenever they up or added and antidepressants they increased the quetiapine but when then reduced or stopped it they didn't reduce it again. I ended up on 800mg and quite dulled to life by it. I had it dropped back to 600mg not long after discharge which suits me better

Until recently I was also on lithium and mirtazapine. I have noticed a significant increase in my energy and briefly whilst I was lowering the dose of the lithium I was bordering on hypomania. My head is much clearer and I'm doing better at work too which has stuck even after the hints of hypomania has dissipated

Combination of Aripiprazole & Lamotrigine was the least sedating for me but unfortunately didn't control the hypomania.
Am on quetiapine & carbamazapine now which are quite sedating but managing taking the quetiapine only at night.

Thank you @Serencwtch @Superscientist I started on Quietiapine, which was too sedating for me…. I’d sleep for 12-14 hours a day. Then I went on Aripiprazole which was great at first, loads of motivation… then it made me depressed.

I’m now on risperidone. Bit of low mood but I wouldn’t say depressed. Energy levels are low and often feel lethargic. It’s early days but hopefully i can look forward to my energy levels being ‘normal’. It’s good to know there hope.

Has anyone been on Lamotrigine? How long did it take to work?

I'm struggling really badly especially today and feel like ending it all but I want to be alive for my dh and kids.

I'm stuck between a rock and a hard place 🥹😔

You definitely need to stay alive for your kids. Have felt like that too but there is always always hope & nothing ever stays the same forever.

I was well on lamotrigine for a long time but had to stop due to a skin rash. It was well over 10 years ago so can't remember what it was like to start. It definitely wasn't a magic bullet but it stabilized things so length of time between hypos & lows got longer. I think it took several months to get the dose right.

I am, I'm fighting everyday. Everytime I get the horrible thoughts their little faces pop into my head and my heart breaks. I love them so much.

I just want it to work ASAP. I feel so lost and down.

Thank you for replying ❤️

I have been on it twice and sadly for me it does absolutely nothing. The first time I was on it with olanzapine and it didn't improve my depression and when they added an antidepressants in too a single dose sent me manic in 12h so it didn't work on the high moods either.

The second time I was on it with quetiapine, mirtazapine and lithium. It was added in last and my mood did improve a little in that time but I think that was more related to being able to get back into work and life again after being discharged from hospital. It was the first medication I dropped and noticed no difference.

I have heard lots of good things about it though and I get on with meds that others don't. It's the shittiest thing about mental health. Life would be easier if we knew it was just insulin or thyroxine that was needed to improve things!

Hang in there. Lamotrigine is a pain to start as it takes ages to get up to a therapeutic level so not a quick win which can be challenging when you are desperate for a relief. What support do you have at the moment?

Aw really? This is what I am worried about, waiting weeks and suffering for it to do absolutely nothing 😔 I'm under mhaats at the hospital so I phone them or they come out and see me. I phoned them earlier and all I got was "need to give the medication time to work" but I don't have time 😔😔

Oh bless you. I'm not necessarily typical. Whenever I have spoken to psychiatrist they have been surprised as it's one of their reliable medications that is most likely to help. Whenever I have been on lamotrigine it has been during episodes that have been tricky to manage so maybe they were asking more than it was capable of.

What other medication have you tried, how far into the introduction of lamotrigine are you? Are you getting enough day to day support?

I find lamotrigine very good. I was on sertraline but my depression wasn't shifting. Lamotrigine was added and I started to feel much better.

I'm on day 4 of lamotrigine 25mg, and I see the mental health nurses every 3 days but I feel like I need more support. I'm lucky i have a great hubby and beautiful kids that are happy and healthy and all I keep thinking is that I'm just a waste of space and don't deserve them xx

Ok so really early days. It's so hard when you start a medication with promise but you have a 4-8 week wait to ensure before you find if it works for you. If feels never ending. A lot can change in a few weeks. My severe depression and psychosis went from treatment resistant and me in hospital to being back at work 2 days a week in 8 weeks. When I went into hospital and heard the words "treatment resistant" I thought this was how I was going to stay for the rest of time. The lithium worked quite quickly on the psychosis but was slower on the depression.

I know what you mean about getting good support and a supportive family being good but also possibly still not quite enough. Is there any prn medication that might help whilst you get up to a therapeutic dose of the lamotrigine?

I find writing things down for how I'm going to get through the week or day or hour or minutes (depending on what my distress tolerance is). It could be as simple as I'm going to make a cup of tea and sit and mindfully drink it or on a better day work to the shop for a loaf of bread or pint of milk.

My psychiatrist gave me this list on Tuesday. He says it's his 5 things to keep the psychiatrist away

1. Be mindful - even if it's just whilst drinking a cup of tea
2. Be active - even if it's a walk up and down the street
3. Be connected - even if it's random strangers on Mumsnet!
4. Learn something - have been learning french with Duolingo and it is giving me a bit of a focus even if it's just for 3 minutes a day. Or even watching a bit of TV. I love things like the sewing bee or pottery throw down. I will unlikely use these skills but I enjoy learning the mechanics of making a dress or a teacup
5. Giving - do something for someone else even if it's just listening to their day.

I find these things easier when well and partially because I don't massively lower my expectations of how I might reach them on bad days which why I've added the low level suggestions

The brain and the body craves routine too and it can feel impossible to have a routine when you feel desperately sad. Find routine in whatever you can. I remember one time when I was off work sick my routine was breakfast TV followed by an episode of gilmore girls followed by an episode of Downton abbey. It provided a rhythm to the days even when all I could manage was staring at the TV!

Hi everyone, thanks for the supportive messages. Sorry I wrote on this thread and then disappeared!

I am doing ok, but after 5 olanzapine depots making not the slightest bit of difference to my psychosis we've now added in aripiprazole with the plan to wean off the O and fully onto the A. I do feel brighter overall though and able to engage more meaningfully in conversations now, can watch tv and do activities now, whereas for the first 8 weeks or so I could barely hold a conversation.

Hope everyone else is ok.

@hk1993x I've been on lamotrigine for years and I really rate it as a mood stabiliser. I have come off it twice (once by accident, didn't take meds on holiday) and noticed the difference quickly. I'll probably be on it for life which I don't mind at all because it stops the extreme emotions that come with BPD for me.

What dosage are you on? I'm a week in and feel like utter shit 🫠 did it make you zombiefied etc? X

Hi, I'm on 300mg. It takes ages to build up to a higher dose. I don't feel zombied at all but all people respond differently

Don't know if I have the right to comment here but I have PTSD and GAD. The past year has been traumatic . Found someone dead through suicide.

I have hardly slept through nightmares etc but when I do I sleep ages then wake in the morning disorientated and confused like this morning.
I hallucinations of snakes at night. I disassociate. I sob myself to sleep every night
I have been in deep depression for weeks not washing nothing I have even seriously considered ending it I have a plan of how to.
I have literally nobody just my mum and its hard. I have a dog and I literally have no purpose anymore. I don't know why I'm writing

Aw that must of be been so traumatic for you 🥹 did you recieve any trauma therapy etc? You do have a purpose hun, are you getting help x

What do you mean? I'm scared I lose who I was, I love to joke about have a laugh etc. I just don't feel happy, all I do is sit and stare into space, cry or speak in monotone. I hate it 🥹

I had counselling did nothing. I am waiting for trauma therapy assessment. Was on antidepressants but had reaction to them and others made me hypo and manic

Is a mood stabilisers or antipsychotic an option
Antidepressants make me manic but I have been on quetiapine for my bipolar for 12 years. Primarily I need it as an antidepressant but it does help with my high moods and anxiety too.

I have sent you a private message. Hope you don't mind

How is everyone doing ? I have schizoaffective disorder and I am feeling pretty low at the moment. Saw my cco today, she’s going to call next week to check in. So scared I’m going to spiral downward again.

HI @MêmePasPeur I'm sorry you're feeling pretty low, I hope you don't spiral, hugs. I'm a bit low/hearing voices too, so I'm also worried about spiralling, but my care coord is away til the end of July so I've got random people checking in on me.

Hello everyone, sending love to those feeling low.

I switched to Lurasidone a month ago and I'm finally seeing the light again. The aripiprazole did nothing except make me sick, and the olanzapine I've been on for years had stopped working.