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 Seren, well done on leaving hospital. My DD25 has recently been diagnosed with schizophrenia, it has rocked our world and she is in denial. On CTO and receiving injection but not helping her so far. You have my admiration for coping with work and family, you must be a very strong person indeed.

Thank you & hugs to you & your dd. It's a beast of an illness & still has a huge stigma attached to it.
I've had several admissions under section.

In my 20s I had years when I basically never left hospital then gradually the gaps between 'episodes' got longer which gave me periods of stability & normality.

There was 8 years between my previous admission and the recent one & it was alot shorter (just over 2 weeks)

Reassure your dd that many people with schizophrenia learn to manage it & go on to lead normal (whatever that is) functional lives with jobs, relationships, children etc. I've got many long-term friends I've met through mental health services who are probably the most awesome & strong people you could meet.

It's going back a few years now (I'm in my 40s) but there used to be a young man I think Jonny Benjamin who worked in TV industry & had schizophrenia he made some brilliant blogs, vlogs & a TV documentary about being suicidal. Might help your dd.

Im not pretending it's easy but there's always hope x

So glad youre episodes are not as frequent and you have long periods of being well. I am just hoping that DD meds starts to work -Paliperidone depot, I cant find much information on this. Thank you for the positive stories, I will Jonny Benjamin. U fortunately atm DD doesnt believe she is ill and we are all 'in on it', its so upsetting. I really wish you well.

That's part of the illness unfortunately but should improve on the right medication.
I can look back on those years with my mum now - we call them the dark years. I remember trying (and failing) to get her removed as nearest relative. Now I can see just how awful it was for her & can see that she never stopped loving me or advocating for me. I think it's probably harder caring for a child with the illness than going through it yourself.
Hang on in there as there is hope. The illness is at it worst in the early years.

Many thanks Seren, I really hope my DD gets some insight and realises we are trying to help her. Best wishes to you and I hope you remain stable and strong. It sounds as if you are coping wonderfully.

I've had psychosis since 2010, many hospital stays under section too.

Sorry to hear that Snowy. Have you found meds that help?

I find that clozapine helps me. Do you find any meds helpful @Aquamarine25 and all?

It is my DD that is unwell at the moment. Aripiprazole has not worked and now on paliperidone depot. Just started so hoping it starts to have an effect.

I was never stable on aripiprazole so now back on quetiapine plus carbamazapine & vortioxetine.
Was stable on respiridone for a long time but had to stop as it caused lactation.

@Aquamarine25 I hope those meds help your daughter. @Serencwtch That's a shame about the respiridone, I hope the quetiapine and other meds help.

I've got Schizoaffective disorder mixed type. & having a depressive episode at present.
My psychiatrist also insists on saying that I have emotional dysregulation due to EUPD which I feel very offended by! I have told him that. As I feel my personality is fine. In fact half the time I don't even feel like I've got any mental health problems.
I'm on Aripiprazole 30 mg & Venlafaxine 337.5.mg plus prn clonazepam & promethazine. I'm so used to the doses now it feels like I'm not on any meds.

I hope your episode improves soon kaiadeluded.

Hi I have bipolar 1. I have had poor mental illness since my teens. I was diagnosed with bipolar in my mid20s bit my mood has been more stable since my life became more stable around aged 30. I have only had one notable episode since then after having my daughter in 2020 when I was diagnosed with treatment resistant severe depression and psychosis resulting in my first hospital admissions. I needed a lot of medication to bring me out of it but over the last 18 months I have been slowly reducing the medication and as last week I am now only on quetiapine which has been the corner stone of my treatment for the last 12 years. Lithium was the last med to drop and I have had so much more energy since doing so although sometimes too much energy so now on the watch for hypomania/mania.

Despite many years of managing my medication the constantly second guessing what normal stuff might mean in a bipolar world. I have had negligible support since leaving hospital in sept 21 aside from regular med reviews but since January I have been able to advocate my needs a bit more so I'm seeing my HV more regularly for support managing mother hood with illness and my daughters illnesses and the nurse that supports those one the smi register every 2-3 months for more regular chats rather than just the annual review.

I have recurrent depression with psychotic features. On fluoxetine and olanzapine long term.

Recently been struggling with weight gain possibly due to the olanzapine, does anyone else struggle with this?

Not getting much help apart from the GP who does yearly blood tests.

Have any of you struggled with e.g. menopause? I'm going through that right now and the GP has given me HRT which is good as I worried they would dismiss me and put it down to MH.

I was diagnosed with bipolar in my late forties. My child died and the depression was very severe, what followed was a period of mania where I got pretty close to destroying my entire life. I was not doing good. I was put on a programme for people with multiple overlapping diagnosis. So mine are bipolar, PTSD, anxiety and OCD. I was on meds but have a heart condition so am on no medication now with the agreement of MH services. This programme, psychodynamic therapy was on the NHS.

The course was for 18 months and consisted of three days a week in a day unit. Doing individual and group therapy plus art and drama classes. I had therapy on a one to one weekly basis for a year before to prepare me. I also had one to one therapy after the course. All in I had a lot of support from MH services for about 6 years.

I’m lucky that my workplace retired me on medical grounds so I receive my pension and my DH has a decent job. It means I do not have to deal with the stresses of the workplace. I truly loved my job and am sad I was retired but could never have managed it. I have a small life that’s prescriptive to keep me as safe as possible. I have been discharged but have access to a 24 hour MH helpline and my psychiatrist said I could ring her secretary directly and bypass GP services as known to the service.

I walk for an hour every day, eat healthily and avoid crowds. DH was always a bit of a homebody so he is fine with it. I’m also aware I have had most of my adult life living in a more regular way. It’s like I have been two different people.

Thanks @Aquamarine25

@Orangesandlemons77
I've been struggling to lose weight on my anti psychotic medication too which is the Aripiprazole although it is coming off slowly.
I was found to be pre diabetic so I followed the recommended plan which is less carbs of any kind, more veg, low sugar fruit like berries, more lean protein & some dairy.
I also got a vomiting bug and lost 5lbs which I've kept off!!
So in total I've lost a stone since last year but got 3 & a half to go... I also get so tired on all the meds (I take meds for epilepsy too) so exercise is difficult.

I'm also peri menopausal I think. My psychiatrist says the extra oestrogen in HRT can make you less paranoid. Apparently.
I'm on the progesterone only mini pill which I take to avoid having periods, which can cause me to become suicidal and have feelings of unreality.

So I'm only using topical oestrogen & pessaries before my holiday in June, will continue the mini pill & look into the various types of hrt afterwards, if I can still avoid having a period I will.

Thanks, Interesting. Yes my GP said similar about HRT. I think it does help a bit. I asked him about the mini pill and progesterone but he said it is different as a more natural type and I seem OK with it (had had similar with mini pill)

Oh, I asked about changing from olanzapine to Abilify and GP said they are all the same basically, I see you had problems with it as well.

I think my GP is quite good. I'm lucky I guess. But it is a shame the meds cause these problems when they can be helpful in other ways. My BMI is now 37. I'm going to try stuff myself and then get back in t ouch to see if anything else can be done. GP tried dropping from 5mg olanzapine to 2.5 but symptoms got worse plus weird dreams..so back to 5mg again.

kaiadeluded Oh I understand about those epilepsy meds and tiredness, they tried giving me pregabalin for nerve pain and are now suggesting others. It's really tough to have this along with the other meds which can also cause side effects. I hope you have a good GP, that can help if they understand how things interact etc.

I've been on quetiapine for 12 years and I think that has caused me minimal weight gain. I have gained weight in that time but I think it has been unrelated. I gained some weight when I turned 30 and then more weight when I stopped breastfeeding and started on lithium as well as the quetiapine. Trying to lose that. Also just had a sickness bug and lost 2kg and seems to be keeping that off so hopefully it will continue to nudge down a bit. If I could lose half of what I have put on I will be happy

I'm on the mini pill as the combined pill made me suicidal every time I had the week break. Prior to pregnancy it was great and I only bled if I slept over at my sister's (weird body!) since stopping breastfeeding I bled every 14 days for about a year now every 28days which is annoying although much better than 14days! I did get it checked out and nothing seemed to be amiss. I'm in my late 30s hopefully I have a few years before the perimenopause based on my older sister and mum but I am nervous about the impact of hormones on my bipolar as they and life changes in general triggers instability in my moods.

Another thing I wanted to say about the AAPs is that although they are in the same class you can get different side effects with the different meds. When I was on olanzapine I fainted or felt faint every morning until I had a drink. I literally lay on the kitchen floor whilst the kettle boiled for a cup of coffee. I have never had this on quetiapine and they are very similar drugs so it is still worth investigating other meds for improved side effect profiles even within the same class of drugs.

I'm mid 40s and currently in peri. It's definitely having a huge affect on my mental health. I had appx 6 episodes of proper mania with psychosis in 25 years now 2 episodes in a year. Have always suspected that hormones especially being pre-menstrual were a factor so I guess it was inevitable that peri/menopause would affect me.
Its completely dismissed by psych. I raised it on my last admission but it was as if they didn't hear me they definitely did not want to discuss it. Thought that was odd as menopause has become alot less taboo everywhere else. Psychiatry just seems to be resistant to understanding women.

I found olanzapine to be worst for weight gain & constant hunger & cravings.

I'm on quetiapine now which is much better although still as sedating.

Aripiprazole is meant to be the least weight gaining of all but it just didn't work for me.

Maybe try speaking to the GP and mentioning eg. hot flushes and they might prescribe it. I saw a recent interesting medical journal article about HRT and severe mental illness and how it might help. I think I'm lucky with my GP as he suggested it and said it's fine to take it alongside meds.