MESSAGE FROM APP ADMINS: This post contains distressing information. If you are feeling vulnerable, do take care if reading this post.
I have recently read a few accounts by ladies on the forum about what they experienced when they were psychotic. I had my first psychotic episode when my son was 2 but it had been building up from my pregnancy. I had hyperemesis with my son and shockingly bad treatment from the midwives at my local hospital. We had moved house and the midwives that had done my pregnancy scans had been wonderful.
But by the time we moved house I was thin and experiencing very poor care.
My first psychotic episode occurred after I sent an marketing idea to my favourite retail chain who used my idea and did not pay me for it. I became obsessed by with them and started to keep a blog sure that I was being cyber stalked. There was a slow decline in my mental state and I began to believe that God and his son lucifer were trying to harm me and my son who by now was 2 years old. I told a health visitor that I felt that there were cameras in my home and then very swiftly I was taken to a psychiatric unit. For some reason almost every two to four years after this I would replay my son's very Traumatic birth in my head and believe that God was after me again. When I was ill I tried to jump from a moving car and many times thought of jumping from a local bridge. I left a sequence of very good jobs where work place bullying would trigger an episode of psychosis.
Is there other mums who've had more than one episode of psychosis? Or had similar beliefs ?
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JosephineFay
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Thank you for sharing some of your story here. It must have been so frightening to have believed you and your son were going to be harmed and I’m sorry you’ve experienced a number of further psychotic episodes since then with similar beliefs.
My episode of postpartum psychosis is the only episode I’ve experienced and I didn’t share the same beliefs but I wanted to reply and send some warm thoughts your way. I had a number of beliefs when unwell, they changed rapidly - some were pretty abstract (I was language, I was colour…), others linked to books I’d read or films I’d seen, especially ones of a more science fiction or fantasy nature, with a belief I kept coming back to that I was Mother Nature, my ‘job’ was to have all the babies, I was some kind of chosen one and something terrible was going to happen if I couldn’t figure it all out.
I wondered if you’d ever been offered any trauma therapy for what you went through, I know it is so helpful for some people and may not have been something that would have been offered previously?
You’ve been through so much, I hope it helps to read others’ experiences. There are lots of personal stories on our website too - app-network.org/story-board/
Dear Jenny, its just gone 11pm here in the UK and I can totally relate to some of what you experienced. In particular believing that I was a chosen one who if I didn't fulfill a mission would be harmed along with my son.
I after 20 years have only recently been taken seriously about wanting trauma therapy. In the past the psychiatrists have just prescribed medication for me and left me to it.
Not once was I offered any kind of talking therapy in fact I was refused it told I was too ill to have it or told that because of being diagnosed with Bipolar that I couldn't have therapy.
I now see a private psychiatrist who is amazing but she is expensive. On the NHS I have the cmht finally saying they are going to look for a birth trauma group for me.
Thats nearly 21 years after I gave birth and only now are my care providers suggesting this.
I do think that early care and counselling would have given me better health and fewer relapses. I may have even met some other mums who'd had PP that would have understood me rather than being shunned at the nursery and school gates when other mums had noticed me terrified and afraid during one of my many relapses.
I think that's the hardest thing not having a female support network in real life to talk to. Mental illness as I manifested it, often trying to take my son out of school at random times and trying to run away with him. The worst case was in 2015 when he'd just started secondary school and I ran away with him to a women's refuge convinced that my husband wanted to harm us. I moved him around from school to school and as I also left a well paid brand new job at the same time my poor husband had to sell our dream home because he couldn't afford the mortgage alone.
My son left school with a btec in music , a music diploma and his gcse English and Maths. My illness totally destroyed his young life.
He has been caring for me since he was 2 years old and it was only when he was 17 that social services got involved about sending him to a Foster home. I wish they could have done this but in the end they decided not to remove him from my husband and I care.
We were not able to protect him from my illness, my husband has always had demanding jobs and my son was coming home from school since he was 11 to an empty house and no one supervising his home work because for a number of years after my husband got my son back from the refuge I wasn't allowed to live with them or to see my son. I didn't see mu son for nearly 2 years as my husband couldn't forgive me for going to the refuge
So my son became a latch key kid and he's really struggling now as a young man of 20 who evert few years would end up with a very ill mother.
What makes it worse is that my meds Haloperidol stopped my periods for many years and gave me the menopause. It has been a shock to realise that my child bearing years are over and that I was never ever again able to have another child and to make happier memories of child birth the second time around.
I'll work on trauma therapy with my private psychiatrist. By the way she disagrees with the NHS and doesn't feel that I have Bipolar or the schizo Affective Disorder that have been discussed within the NHS. My private psychiatrist believes that I have ptsd and severe trauma causes by Traumatic birth abd that I have episodes of psychosis.
She believes too that my first episode of psychosis was caused by the SRI or antidepressant that I was given and that future episodes have been caused by medication withdrawl.
She doesn't believe that I should have berm prescribed antipsychotics and that I could gave been treated naturally.
Sorry for the long response, I was really touched by your message.
It also felt amazing to reveal what I'm thinking when I have psychosis. How complex it is and how deeply the mind can create a false narrative when we are afraid.
I'm so sorry you've been through all of that and weren't offered more when you were first unwell. There is a lot of trauma and loss amongst what you've shared, that must be a lot to 'hold'. I was never offered any kind of talking therapy either, when I said to my care coordinator at the time that I thought I'd reached a point where I wanted to talk about my experience and perhaps some counselling might be helpful her reply was that maybe it would be best just not to think about it... It's always been a relief to be able to write and have people I can talk to, I do believe if we can't talk about these things it will come out eventually in other ways.
Are you aware of the Birth Trauma Association? Their website is birthtraumaassociation.org/... - they offer peer support in various formats too and information and resources that may be helpful.
It's good to hear that you will look at trauma therapy with your private psychiatrist and that the CMHT are looking for a birth trauma group for you, perhaps it is finally being more recognised but I am sorry you've had to wait so long.
I find what our brains can do and where they can take us both fascinating and terrifying. I'm glad we can share here 💜
Hi Jenny, thank you for your very kind message. You understand my experience so well. Can you tell me apart from APP are you in employment? Have you been able to get back to a normal life since your experience?
I am hoping that the talking therapy will help and maybe help me to find a way to stave off the huge loneliness that I feel every day of my life.
Yes I have been able to get back to a normal life, I am employed by APP now but previous to that did go back to my last job.
I hope that talking therapy and finding support groups will be a help to you, as I hope this space is as well, we all have a need to feel connection and understanding 💜
Have contacted the birth trauma association and they only had a peer supporter who is based in the United States but it is a UK organisation. The lady whose been in touch looks nice.
Hey Josephine. I’m sorry to hear you’ve had so many awful episodes, it must have been so scary. Plus receiving poor care leaves a lasting affect.
I also experienced very real (to me) delusions. I thought my partner and 3 year old were poisoning me, I’d hide my food when I could manage to eat and make my self sick when I thought it had been tampered with. this then transpired everyone was, Including the government with the tap water, non organic food and medicine. So I refused medicine for a whole month where I was extremely unwell and in a deep long psychosis. I hardly drank water for a month or food. It was pure torture. I was met with extreme anxiety and mania when I tried to do these simple functions. It was hell and I’m still traumatised. I heard voices everyday inside and outside my head and were ‘shown’ extremely deep and vivid hallucinations, like being transported into an alternate reality. They all added up to this story about capitalism really and how I couldn’t cope with it, I didn’t understand poverty etc but my brain blew it up and exaggerated it massively. It was incredibly traumatic but also very interesting my brain could do something like this.
This was my only extreme psychotic and severe illness I’ve had. However I have been able to hallucinate since a child, had a mild episode when I was 19, had a milder week long episode when I stopped breastfeeding, then monthly mild episodes when my period comes as I also have pmdd. Now changed to olanzapine and it has died down so many of my symptoms I feel very… boring. It’s a strange feeling.
Talk to us anytime. I’m also interested to hear how other people’s illnesses have panned out xx
oh and before an episode I go quite manic and feel very connected to god and the world is so so beautiful, nature is wonderful, everything is slow motion. So I relate to the religious beliefs during illness
Isabella, it's interesting how so many people have religion as part of their psychotic experiences and feeling persecuted.
You're experience sounds really traumatic and hard. Thanks so much for sharing with me.
I also had auditory and visual hallucinations and vague voices. They were usually of people I know and I thought that people had telepathy, that I was the only person in the world born without it and because I had now also magically acquired the ability to hear voices that God, lucifer and dark angels and their human collaborators were after me.
My triggers are situations where I feel bullied or made fun off. So my pregnancy and labour and the poor care I received and also when I've been bullied at work.
The mortification I feel makes me turn on myself and have a whole lot of delusions with persecutory voices.
As I've mentioned on quite a few posts I am not coping with my medication at all and having some horrendous side effects.
These are aching muscles, pain in all my joints. Chronic fatigue syndrome, chronic insomnia, protracted withdrawl symptoms.
I'll be talking to my therapist about all of the above especially the insomnia, pain and chronic fatigue.
This morning as I write to you I'm supposed to be at college for an IT course, I've missed 3 weeks of it due to the physical side effects of the medication.
Ahh I’m so sorry for all you’ve suffered. It is not a walk in the park having mental illnesses. I remember how terrifying it is to hear scary voices.
I also had a very bad reaction to the drug quetiapine. I slept for most of a week and couldn’t walk more than a couple steps. It felt like poison in my body, I was really unwell. Bad chemistry reaction. Olanzapine is working pretty well for me now and I feel much better.
I truly hope you find something that works well for you xx
Hi Isabella, I'm so pleased that you've found a meds that works well with your body. I've been on risperodone, quietiapine, olanzipine, lithium, haloperidol and ariprizole over 19 years. They have all given me horrendous side effects and in fact I have been disabled by my current meds sometimes unable to get out of bed because of the pain and sedation. My body just seems as if it can't tolerate antipsychotics. I have been tapering since October and anticipate that it will take another year for me to wean off. I miss being able to sleep more than 4 hours a night.
Gosh that sounds truly awful. Yes perhaps antipsychotics just don’t agree with you at all.. have they suggested drugs like lithuium? I’m sure you’ve done a lot of research trying to figure out what will work best for you x
I hadn’t realized all the trauma you have had and I’m so sorry. You and your family have been through a lot. To think that a lot of it might’ve been avoided is tough.
During my initial psychosis I was very concerned about aliens and evil sentient beings lurking in my house or trying to get in my house. I heard voices telling me how bad I was and to harm myself or kill myself in various ways. As I slept less and less, that was 24 hours a day. Before I was hospitalized, the television was talking to me and I was scared out of my mind of any electronic audio. To this day I will jump and react to any kind of loud, strange sounding electronic voice because that’s what I heard when I was ill. I’m not psychotic now but that experience has not ever quite left me.
Interestingly, when I was ill, my providers kept trying to get me to remember past trauma in my life, to the point where I believed I had some that I really didn’t. Evidently they did think it must be trauma based. I didn’t have a traumatic childhood, other than my own depressions.
After starting on antipsychotics I did not have exactly the same symptoms and some of the ones I had could have been related to meds, which I know now and didn’t then.
We all make decisions with what we know at the time and regret later. I have some big regrets myself. I am trying to move forward as much as possible and focus on the time I have left.
Hello, thank you for kindly sharing your story of psychosis. Its really helped me to read this and to realise that this is such a common experience in new mothers.
I agree with you that years ago there was not good methods of diagnosis. I also feel that even now not enough women are diagnosed with trauma or ptsd? I feel that the psychosis label takes over and that the trauma is not treated or addressed.
This leaves a permanent mental scar. I also agree with you, my antipsychotics have actually given me psychosis. My private psychiatrist calla this rebound psychosis due to my coming off meds in the past and that this was part of withdrawal symptoms.
It's been excruciatingly slow to try to get off the meds. I am currently on 4 tablets but since October have only been able to reduce by half a tablet. At that rate it may take me 2 years to be able to wean off them. I have been on the Haloperidol since February 2023.
Oh, I’m so sorry, Haldol is such a severe drug with so many side effects. I can only imagine what you must be feeling.
I too am going through a really rough time right now. I had a surgery a few months ago and have had bad complications from it ever since. The incision came open and has not healed, and I’m going through pretty extreme measures for wound care. I already had to have a second surgery for infection and almost died. I may have to have a third and I am terrified of it. I don’t know if I will live through this some days.
But, we have to do what we’ve always done, one foot in front of the other and hope for the best. It isn’t easy.
I am so so sorry to hear what you've been going through with your recent surgery. You have been an invaluable support on this forum. I hope that I can extend you the same support back. Please note that I'm always here if you need to talk and that there is the private chatting feature if you'd like to chat about anything and I am sending you a big hug.
It must be very worrying to think that you may need further surgery after going through so much already. As you say, it isn’t easy for you. I’m also hoping for the best care for you. Rest as much as you can and take care ... you are in my prayers. 🌻
Welcome to this briliant band of mothers! I’m sorry to hear all that you went through, some of which I can relate to. I had PP twice, six years apart, when my sons were born many years ago when mental health was only spoken about behind closed doors.
With my first son I became psychotic four weeks after he was born the consequences of which are too harrowing to record here. Suffice to say I was sectioned at my parents’ home while waiting for a psychiatrist, transferred to A&E and then onto a Victorian asylum to a mixed ward, without my son. I was in and out of a few units and finally went home after six months.
I have read my notes and the first thing I uttered, after being mute for a while, was how ashamed I was. I carried this unfounded guilt into my sons teenage years, not knowing what had happened. My parents would not speak of it and warned my husband not to say anything for fear I would be judged. So I was a secret ..... Thankfully with a combination of medication and ECT I recovered.
Following the birth of my second son I told the night staff that I had seen a moth in my room, which grew in size and was telling me I was a bad mother (similar to my first psychosis). The staff told me not to worry but I went on to develop PP a second time. I had similar treatment following my second psychosis but experienced severe depression for over a year. I wasn’t coping and was admitted to psychiatric units as an inpatient for further ECT.
During my second psychosis, my late husband had a breakdown and was admitted to hospital. The tables had now turned as I visited him. But we endured and had many years of happy family times. It wasn’t until I found APP and my diagnosis was confirmed that my guilt and shame lifted .... I knew that it wasn’t my fault and I had no choice when PP hit twice.
I think your son has done very well in music. My sons are very loving and caring and we have been on such a journey. My second son was in a college band, (self taught bass guitarist), and then confident as lead vocal, wrote his own songs and played in local venues. My first son was his ‘roadie’.
I’m sorry you’re struggling and hope the private psychiatrist will guide you and be reassuring. The hallucinations and voices are all very real and frightening so do take care and be kind to yourself. PP mums really are amazing!! 🌻
Sorry for rambling ... this was also a comment I read in my notes, that I was rambling and took ages to get to the point!
So happy to hear back from you. It has been an awful time and I do not think that I ever deserved any of my sections or being put on medications I feel that a respite house with mental health staff would have been more appropriate. As it is I am now trying to taper off the medication and its taking a while and I've been shocked by how dangerous these drugs can be for some people. I have read how beneficial they have been for many mums and I'm glad to hear it but for me the insomnia and extreme fatigue are simply too much for me to bare. I fell asleep for 10mins this afternoon which is incredibly rare and I'm now dreading the night ahead if I will get any sleep. I can relate to being sectioned and being put on a mixed ward and to being separated from your children. It sounds as if you've made a good recovery are you still on antipsychotics or are you now drug free?
I have found the medication really quite an ordeal.
It must have been very difficult when your husband too had a breakdown are you in paid employment?
Thank you too for your encouragement for my son. I need to hear that, I have been shunned by my our local community when obviously other parents saw me when I've been unwell, staring at them wide eyed and trying to remove my son from school. I still feel very alone with this experience and the meds feel like a punishment.
Thanks for writing. I’m sorry to hear how much you are suffering with fatigue and insomnia. Reading my notes, some medications did help my delusions fade over time (watching the news and being so certain that I knew before it was reported that it was going to happen ... presenters on the radio talking to me ..... hearing a voice. Seeing a moth which grew bigger and would sit between me and my husband, shouting what a bad mother I was. So I would shout back and it looked as if I was shouting at my husband as no one else could see ‘it’. ECT was my lifeline .....
I did make a good recovery and am not taking any antipsychotics.
I suffered sa from the age of six which my parents knew nothing about. I wrote a verse to myself beginning “Childhood trauma was that the trigger of my PP when I was bigger? .....”
I think as mothers we want more than anything for our children to be well and happy. I’m sure your son knows how much he is loved and how proud you are of his results. So hard for you to feel shunned by your community who are not aware of the effects of PP and subsequent issues.
Thank you 🌻 I’m sorry to hear you live with your trauma everyday and it has impacted your mobility, being unable to attend an IT course which might have provided you with a slight distraction from your pain. We are all mothers of courage and I hope with family support and professional input you will find relief.
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