Action on Postpartum Psychosis
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Postpartum psychosis

Hi.. here to talk and share experiences, offer help and advice and also hope to get some advice for myself :) I had pp 2016 with my first son.. I still remember it well fully recovered a while now.. have a lot of stories to tell and would like to talk to others about there experiences .. thanks

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I had PP in 2016 too. I’ve only just stopped taking olanzapine and I’ve been told I’ll probably be on venlafaxine for 2 years. PP was an awful, mind blowing experience. And it’s been a long and tough journey of recovery and self discovery. I have a beautiful son though, a fab husband, a good job, and a great support network, so I am grateful for all the positives I have in my life. Happy to share experiences/ideas.

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Hey.. I agree it is a long recovery.. I was on olanzapine too that was the one that seemed to help me most.. the experience is mind blowing.. I had a lot of bad but also some you could say quite amazing.. I had everything from delusions to hallucinations feeling as though in a dream world extreme confusion to then think so clear and fast.. time seemed to alter and I felt I had experienced every type of emotion.. be good to hear some of your experiences see if any were similar.. this lasted about 4 months for me.. first month hardest.. I'm glad your doing good and seeing the positve.. I was on olanzapine for about a year not herd of your other medication.. I have a boy 2 1/2 :)

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Hi JanuaryX can I ask how you went weaning off the olanzapine. Especially with managing sleep without it.

Thanks

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Janellec

By the time I was weaning my sleep was okay.. I sleep about 5-6 hours a night that's normal for me.. I can sleep in though when my boy sleeps at his Nana's. have you been on olanzapine long? Do you want to come off it now ? are you still on it for psychotic symptoms ? Or just for sleep? I personally wanted off it as soon as I could but everyone's journeys different

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Olanzapine worked miracles for me! Within a few days it took me from some very dark and scary places to someone who could communicate again! I struggled with the zombie-fying and sedative effects though as I was on it for two and a half years! Weight gain is frustrating too.

My psychosis started in labour. I believed I had had my baby before I gave birth! So actually giving birth was very confusing!! I then had a manic episode and wouldn’t sleep. Eventually I pretty much had a system shut down and wouldn’t move or talk. I had some very vivid and disturbing nightmares which can still play on my mind! I was then sectioned and taken to an acute psychiatric ward. At first I was petrified but eventually I settled in and regressed to a very childlike state. I was there for 3 nights until we could go to the MBU. At the MBU I was still very confused and thought everyone knew stuff that I didn’t. My experiences there were very strange. Lots of delusions and hallucinations. I thought the songs on the radio and adverts on tv had been chosen for me and I thought the whole thing was a set up with actors. I saw signs and significance in almost everything. That stayed with me for a long time - probably over a year after having my son! At one point I couldn’t read and I could only see in black and white. At another point, everything was in such beautiful, bright vivid colours! I was there for 3 months. It was an incredible place!

My son is 2 and a half too. What a great age! Well, apart from the tantrums and we’ve just started potty training!

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Wow .. Yes the weight gain for me was 4stone which I've lost 2 of that still another 2 to go.. and I remember feeling very sedative..

I can relate to what you've said though mine started 4 days after birth and I went into high dependency I couldn't talk was in a daze but then felt fine had lots of psychical tests at first Mri scans etc.. all clear so I went home where things got strange and went to MBU 2weeks after being home.. I thought the telle and songs were speaking what I was thinking I thought my parents were actors and not really them.. I remember the mania and highs where I felt on top of the world with angels but then there's also the dark experiences of demons for example I saw 3 hooded figures in the night over my sons Moses basket they then faded away as I was shouting and ran over I never slept for about 3weeks straight to start don't know how.. I was exploring the meaning to life and past life's in my head so hard to explain..

do you still ever wonder what it was all about.. yeah the tantrums lol and we've just done potty training still a few accidents though.. are you in the U.K.?

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I’m in the U.K.

Like you I had such a mix of highs and lows. I thought I’d been arrested for something really awful and my only choice was between a lethal pill, or a lethal injection. I was in fact in the acute ward being offered sleeping pills as I hadn’t slept for almost a week! My waters broke on the Monday and my son wasn’t born til the Thursday - I was having contractions all that time so couldn’t sleep! I took the pill as I thought it was my only option. I dread to think what could have happened if I wasn’t in the right place with the right support!

In terms of highs, I thought I saw God’s face in the shadows, thought I was in the MBU as a positive role model for other Mum’s (!!) and I sang at the top of my voice whenever a song came into my head. I felt like a real life Disney Princess! Embarrassing when I think back on it!

It still plays on my mind as it was all so real and vivid at the time. It’s hard to explain to people - my husband for example just says ‘it was just a dream, it wasn’t real.’ I know that in th depths of my madness there was an element of truth in what I was experiencing - wished and worries all jumbled up and exaggerated!

The whole experience has made me reflect massively on life and death! I think having a child does that to you too. I have been so poorly though with PP and then depression, it’s only now that I’m getting used to being a Mum. And only now that I’m able to enjoy it without being totally preoccupied by PP!

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I can completely understand what your saying.. when I was having my baby my friends husband was in the McMillan ward just next to us.. we'll they we're due to married the year after in Cyprus but got married at the hospital.. we had strep b infection and my son was thought to have meningitis so stayed in hospital a week it was a hard time waiting on results but deep down I knew he was fine but I had this delusion that my friends husband had to die in order for my boy to survive like it's all a cycle of life so I really went on a journey in my mind of life and death what it all means I wrote loads of notes on my phone about what I had discovered but thought it was too secret and I shouldn't know these answers a few weeks later I deleted my notes there was loads but I wish I could have read them as I can't remember all what I would have wrote.. sadly while we had good news my boy was okay my friends husband died only 29.. I also felt I was feeling everyone's emotions that weren't my own and new what people were thinking.. I started to look into consciousness and believed mine had expanded I've found some interesting things.. it makes you question what you know and reality I am well now but the depression it leaves you with once the psychosis is gone is hard to fit back into the real world.. glad your getting back to you I had another episode in sept 2017 which lasted a week then 4months of depression again but since the start of this year I'm in a good place and even thinking of having another child but it's a huge decision

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It sounds like you had a really frightening experience. I had a similar delusion - that I had to choose for someone in my family to die in order for my son to survive. I was then petrified about anyone dying. I thought I just wouldn’t be able to cope at all with bereavement. It’s so interesting reading that so many people have similar, such extreme experiences! We’re starting to think about another baby too but it is a massive decision! Feel like I need some time to enjoy being a family of 3 first as it feels like the last two and a half years have been tainted by my illness.

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Yeah there are so many different and similar experiences.. it is interesting to hear from others.. yeah enjoy it, it already goes so quickly as well.. :)

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Hello JAnuaryX

Welcome to the forum and thank you for the offer of advice and support. Are you in the UK? It will be so reassuring to other mums recovering to hear how you coped with such a traumatic illness only a few years ago.

My PP episodes were a long time ago and I was sectioned and treated under general psychiatric care as there were no MBUs at that time. During recovery from my second PP I was hit with depression which seemed endless. Thankfully after good care and treatment I fully recovered from both episodes, six years apart.

The forum is a great safe space to share our experiences. There are personal experiences on the right side of the frequently asked questions page at app-network.org/what-is-pp/...

I hope 'meeting' other mums and families here will be a good way for you to heal and look forward. Take care.

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Thank you.. yes I'm in the UK you? I bet that was difficult I stayed in a MBU.. the depression for me was the same I felt it was never going to end it opened my eyes about depression.. did the pp come back with your second then, this is something that worries me as I'd like to have another baby.. thank you for the link.. I think now I'm in a good place I'm able to talk now about my experiences and it would be great to hear and help others and talk over with women who's experienced it personally also.

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Hi JAnuaryX

Thank you for taking the time to reply. Yes, I'm in the UK too. It was a difficult time ... with my first son I was under mixed general psychiatric care for six months without him. Towards the end of the six months, special arrangements were made and I was transferred to a separate room so that my son could join me. As you will know, try as we might, depression is so very hard to overcome and it must have been very stressful for my husband and then six year old son when my second son was born. Thankfully I did fully recover but it took me a long time to regain my confidence and find my place.

I hope it will be reassuring for you to know that there are some mums here for whom PP did not return. I think it's a case of having a good care plan and perinatal support. Since I contacted APP and found the forum, I have been able to share my experiences and listen to other mums who know exactly how I felt and are so supportive.

PP mums are amazing :) Take care.

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Hey JanuaryX welcome to the forum. I hope you find it useful, I know I certainly have.

I was never formally diagnosed with PP, and my primary diagnosis on my medical records is mixed depression and anxiety, but I feel that I definitely experienced a lot of the things people on here have described so well.

with my first daughter, I believed she was fatally ill, and that she would become deaf mute with age. I also believed that this illness was audible in her voice, and claimed she was a devil child trying to kill me by making all these terrifying sounds. I was lucky enough to get through my illness with counselling, and eventually went on to feel much better, but it took years, and i believe I was never properly treated.

with my second, I was much worse, basically everything broke. My mind, body, sense of self, mood, everything just collapsed in on itself. I definitely identify with the feeling of living in a dreamworld, and I was really dizzy for loads of the time as well, so it just added to the sense of confusion I was feeling. I didn't feel able to control my mood at all, and often felt I was possessed by something outside of my own mind. It was like someone else had the controls, and I just had to sit back and let them take over. I had a bunch of sensory experiences and delusions that were definitely not real, but were totally all-consuming. I believed I had a prion disease that would eventually eat away my brain till I had no speech or cognitive function left. It was undoubtedly the most petrifying experience I've ever had. Luckily I was able to get a bed on an MBU, and was markedly better within six weeks.

My youngest is now 16 months, and worth all of it. although I feel I'll never be the person I was, I would definitely say I have become a lot stronger since I had this experience, and I'm on the proper medication now, which keeps me relatively stable.

Anyway,, excuse the very loooong post.

Hope you continue to feel good,

Sal x

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Salorie

Hi thank you.. it sounds like you had some awful thoughts/delusions and it's so strange isn't it how it makes you believe in them then of course once you believe these things all the feelings fears questions explanations your exploring it gets so overwhelming.. I remember thinking who was my boy where had his soul come from was he an evil soul but luckily I concluded he was good but I remember how I felt in the time I thought he could be evil/devil.. I too had times I was possessed I would say things in another voice that I couldn't control (very scary for my partner) I wouldn't sleep I thought if I did I'd never wake up like I was in limbo between life and death and was being tested to see if I could stay here on earth.. the world wasn't normal anymore and many more delusions hallucinations which can talk more about but there's so many.. I think you definitely had experiences you get with psychosis glad your doing well, the MBUs do great work to help and support and your right it's all worth it for them.. I agree it does change you.. and makes you stronger.. the journey through it is tough and scary .. it's good to talk about it as it's hard to always talk when you come across 'crazy' thanks for replying :)

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Lillybeth

Thank you for sharing that.. I couldn't imagine how hard it was to be away from your son MBUs do a great job though at first I hated it and would think they were against me.. I do believe we all in the end make a full recovery though it can leave behind depression and anxiety for a while but again all should be reassured that gets better too.. thanks I'll take a look at others posts and stories I hope it wouldn't come back though it's just you never know.. I'm glad you made it through and yes when you already have a first child the second time with pp would bring that extra challenge as you have them.

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Hello JAnuaryX

To be honest I wasn't aware of my surroundings for a while as I had completely switched off but it was big shock when I eventually 'woke up' to find I was in an asylum as this was mid-70's! I'm really pleased you were treated in the MBU as they provide such specialist care, although like you I was suspicious of everyone at first. At the time I thought everyone else had a problem and I was fine :) I'm sorry to hear you also had to cope with depression. At the time mine hit, I retreated to my bed for a while as my sanctuary and safe place ..... until I was sectioned :(

We are all brave mums and the road to recovery has been different for each one of us. It's good to be able to talk here as sometimes we don't like to burden family with our thoughts and worries. There is also a brilliant blog "PP Soup" at ppsoup.com ...... "a nourishing mix of all things Postpartum Psychosis" which is very interesting and insightful.

Thanks again for replying ...... take care.

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Hi JAnuaryX and welcome to the forum,

You've already had some lovely replies and shared experiences, which is great to see. I had PP after the birth of my first child in 2009 and it was a horrific time; but one which we can come through with the right support and giving ourselves time (although I know how impatient I was at times to be "better", recovery can certainly be a journey). I also had a second child in 2013 and happily remained well, although it was a worrying and anxious period at times.

I wanted to share the link to APP's Insider Guides in case you haven't seen it? app-network.org/what-is-pp/...

Take care, we are all here to listen and share experiences, I am glad you have found us!

xx

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Hi Hannah

Thank you I'm glad I've found this too..

it is such a shock isn't it when it hits out of nowhere..

that's good to hear you stayed well.. was you monitored at home did you have to have medication anyway?

X

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Hi JAnuaryX, thanks for your reply. I stayed in hospital a little longer after the birth for monitoring and also took a low dose of the antipsychotic (olanzapine) that worked for me, a few hours after delivery. I had good support from a local (sadly non-specialist) team which it took me a while to get seen by - long story, unfortunately there’s no perinatal team where I live and as I was well I wasn’t seen as a priority. Writing a care plan was really important too. Anyway it all came together in the end and after a few months on meds and a couple of appointments I was discharged, with no more than a little anxiety which was explained was very natural - after such a horrific illness as pp, I was told they’d be more worried if I wasn’t a little concerned I might become ill as that would show a major lack of insight (which had been a huge thing for me when I was unwell). Hope some of this helps - take care, xx

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Thank you.. this helps a lot.. such a huge decision to another child.. xx

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Welcome! I had PP in 2016 too. Lovely to meet you x

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Thank you.. I've never spoke to anyone who's had pp until this group.. lovely to meet all us mums x

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Hi JAnuaryX

Welcome to the forum :) I had PP after my first son was born in 2012 and went on to have another son in 2016 (also currently enjoying the fab age that is 2 and a half!), fortunately with no recurrence.

It’s lovely to ‘meet’ you here.

Jenny x

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Hi Jenny

Thank you .. ah it's a good age , how did you find your second pregnancy? Did you take meds anyway after? Did you have a support team ? X

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Hi JAnuaryX

My second pregnancy was ok, anxious at times of course. I was under consultant care antenatally so seen more often than I would have been, basically they just asked about my mood and my plans for after the birth, and I saw a mental health specialist nurse a couple of times, but other than that I was under the care of my GP and midwife, both of whom were wonderful, as was my health visitor. I would have been referred to the community mental health team had I become unwell and they, the MBU and A&E (I think) were made aware of me and my due date. I did a lot of planning and had set out in an advance decision document with the MH nurse what my wishes would be should I get ill again and this was shared with relevant people. I’d accessed APP’s second opinion service (an extremely useful consultation with Prof Ian Jones) before deciding to try for another baby and had input from Prof Jones again late in pregnancy around medication as I wasn’t happy with the advice I was given (to go straight onto the full dose of antipsychotic I’d been on when poorly). I opted to take a low dose after the birth (half of what I’d been on when unwell, which could be upped if I started displaying symptoms) and took this for 6 months, under the supervision of my GP. I chose to formula feed as breastfeeding was a major ‘thing’ for me first time around as well as the associated sleep deprivation, and my husband and mum did the nights for about the first 8 weeks I think - sleep was really important! Fortunately I stayed well. I was told my risk of recurrence was around 50% - I’ll never know if I was just one of the lucky 50% or if the planning did reduce that risk, but it was such a different experience and I’m obviously really happy about that! I did feel comfortable that we had plans in place if PP had struck again and it would hopefully be picked up early and treated quickly second time, having had no clue what was happening the first time. We planned for the worst then literally put those plans in a drawer.

Anyway, sorry for the essay but happy to share any experiences that are helpful to you and do ignore anything that’s not!

Best wishes,

Jenny x

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Thank you for taking the time to explain all those points.. I've found it really helpful and will definitely note what you've said.. Prof jones is that a consultation through this app.. I'd agree with the lower dose to begin with too.. I'm so pleased it worked out better for you in terms of pp x

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Hi,

No problem at all, I’m glad it was helpful.

You can access details of the second opinion service on APP’s website here - app-network.org/what-is-pp/... It was extremely useful to me and my husband.

Jenny x

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