Introduction

[AinslW]

Hello, I am new to the forum. Our son James was 1 lb when he was stillborn last summer. I shortly thereafter developed PPP with mania, hallucinations, no sleep, and delusions. I thought I had special spiritual/psychic connections with people, even strangers. I overtalked and overshared with everyone and got aggressive multiple times. I had eclampsia and landed back in the medical hospital for a few days and then went on to the psychiatric hospital for a week. I was prescribed high doses of lithium, olanzapine, and temazepam. I got lithium toxicity and had to relearn how to talk, read, write, and walk. I still don't have my mind back. I want things to be back to "normal" or the way I was pre-pregnancy and that will never happen and I'm having trouble accepting that. My personality and parenting style have completely changed because of the medicine and I'm so numb and checked out and passive. I am slowly getting off meds (as of this week I'm off lithium!) but I am still on olanzapine and temazepam. Hopefully I can come off them soon too but I fear the mania coming back. Prayers, encouragement, and personal stories would be a blessing to me. Thank you. x

[Kat_at_APP Volunteer]

dear AinsIW

I am so deeply sorry for your loss. I can’t begin to imagine how traumatic that must have been for you, to lose precious James. No wonder your mind took flight somewhat. I think our brains respond to trauma in all sorts of ways, one of which is sadly psychosis.

I’m sorry too to hear about the lithium toxicity you experienced - thankfully quite a rare side effect but obviously very serious and the reason those on lithium are meant to be so closely monitored. I hope you are doing better now.

I’ve written here before about “normality” and recovery and to summarise very briefly I think after such a life changing experience as psychosis (and in your case combined with overwhelming grief too) means that the old normal may be out of reach. But meaningful recovery is absolutely possible, indeed likely, and no matter how bad things feel we can all get there. It sounds like you are doing brilliantly well already, regaining all those lost functions and now being off the lithium too. Well done!! I guess the next step is a more psychotherapeutic one, involving maybe some talking therapy to help you resolve the trauma and think forward to what you want for yourself in recovery, Have you come across Dr Kristen Neff? She’s an amazing US-based practitioner of self compassion and mindfulness. Her website has a lot of free resources on it, and it might be a good place for you to start. self-compassion.org/

Thank you for sharing a little of your story here. You are an incredibly brave woman, and I wish you all the best for your recovery,

Take care,

Kat x

[Seasky18 Volunteer]

Hi AinslW

So sorry to hear your story, I can only begin to imagine how hard it must be. You have been through so much.

I had PP 4.5 years ago and can definitely identify with your feelings of wanting to get back to 'normal' or the old you. All I can say is as I came off my meds my feelings gradually returned. I've had to learn patience as I have slowly found my way into being 'me'.

I was on Olanzapine and as I came off it and my feelings returned I also had a lot of grief to deal with and have felt an ongoing 'let go' and processing of all that has happened. It hasn't been a linear recovery - sometimes I've felt like I've got backwards, with times of feeling very low (the psychosis didn't come back, but I did have to deal with depression), but I found as I put one foot in front of another and got through it day by day I got stronger, a bit like a butterfly slowly re-emerging from my chrysalis.

I had to learn to be kinder and more patient with myself and give myself more love and care... it's a journey, and I've gradually learnt to accept it's all part of my journey through life, which became easier to feel peace with as I began to feel love and joy again.

You sound like you've already done an amazing job getting through all that you've experienced. Sending you all the strength and love I can to help you through the challenges as you heal... there are a lot of us here on the forum who have been through so much and we're all behind you willing you on...

Will be thinking of you x

[LongeDD in reply to Seasky18]

hi what was your dose of olanzapine, and how long were you on it?

[Seasky18 Volunteer in reply to LongeDD]

I can't remember what my dose was, but don't think it was very high at any point and it was soon reduced, think I was on it for about four months maybe and on barely anything at the end although it was very noticeable when I came off it completely - not that my symptoms returned, but I was very depressed...

[Naomi_at_app Volunteer in reply to LongeDD]

Hi LongeDD just letting you know I've posted a reply for you on another thread here:

healthunlocked.com/app-netw...

[Maria_at_APP Moderator]

Hi AinslW,

I cannot say how sorry I am again for what you have been through, words fail me, but I am here to listen to you being so incredibly brave sharing this.

I just wanted to say that the numbness you are feeling at the moment is temporary, I experienced it when I was recovering from pp, side effects of medication and the natural process as our brains recover from that huge trauma were contributing. It will get better with the passing of time and the reduction of medication.

I remember feeling that fear of relapse during the first year after I experienced pp, it is such a traumatic event. However, the amount of self awareness you show does mean that you will ask for help at the right time before symptoms escalate. That is a great asset. The team following you will also be keeping a close eye during changes in medication, to ensure that those go smoothly, even more so as you have unfortunately suffered from lithium poisoning, and I am really sorry for that.

I will be thinking of you, do let us know how you are doing, you are a brave and amazing mum. Do take good care

[Jenny_at_APP Partner]

Dear AinslW

My name’s Jenny, I’m one of the peer support coordinators here at Action on Postpartum Psychosis. I am so very sorry to read of the experiences you have been through following the sad loss of your son, James, last Summer.

I had postpartum psychosis 3 and a half weeks after the birth of my first son back in 2012. I stopped being able to sleep and my mind raced with strange beliefs before I switched into a different reality. My delusions and thoughts included a huge, muddled up mixture of things while I was acutely psychotic, followed by a lot of paranoia and intense confusion – everything meant something and was a code to be cracked… Once home, I was very anxious and it took time to build back my confidence – I needed constant reassurance and support. Further down the line, I needed to talk about things and process it all – finding APP and reading other women’s stories and experiences here on the forum and on APP’s website was such a relief in realising I wasn’t alone and that there were others out there who really understood. Everyone’s recovery journey is different and I guess what the destination ends up looking like is different for everyone too, but I hope connecting with others here and sharing experiences of that journey will really help you along the way. You’ve been through so much, you clearly have amazing strength and I’m so glad you’ve found us and reached out here.

As you’re in the US, I wanted to share some other resources that you may already know about but just in case they are helpful. Postpartum Support International (PSI) offer a range of online support meetings, including for postpartum psychosis as well as for stillbirth and infant loss - postpartum.net/get-help/psi...

They also signpost to a directory and resources for loss and grief in pregnancy and postpartum - postpartum.net/get-help/los...

You can also connect with a local PSI coordinator / volunteer - postpartum.net/get-help/loc...

There is information and resources on APP’s website that may be helpful as well, including FAQs about PP and personal stories - app-network.org/

I do hope you have support around you while you navigate these difficult times. Be very gentle on yourself and please write whenever it helps.

Best wishes,

Jenny x

[The_Wes_Anderson_Fan Volunteer]

Hello AinsIW,

I am so sorry to hear that you lost your son.

I had mania, delusions, paranoia and religious grandiose when I had post partum psychosis.

I have since made a full recovery and back to my personality before I was ill, but hopefully with my more empathy.

Sending love x

[Juniper12]

Dear AinslWI don't often find myself here but identify so much with your story. I lost a baby daughter in 2021, suffered pre eclampsia and pp at the same time. I was already diagnosed with bipolar so found lots of support from that helped including a wonderful peer to peer support from APP. I also luckily have found medication that mostly works well after a few years of lots of trial and error. It's been a difficult journey but I've since been blessed with my beautiful son. Have you got bereavement support? If you have time for (and feel ready) counselling may help. Support comes in many disguises. We found shared experiences from all over the place were invaluable. Take all the time and space and support you need. Take care and don't feel alone. X

[Lilybeth Volunteer]

Hello AinslW

I am so very sorry for the loss of your treasured son.

It is heartbreaking to hear how much you have struggled after also developing PP. I hope it has been helpful to read the personal stories in the links given by Jenny. Another resource is “PP Soup” described as a nourishing mix of all things Postpartum Psychosis at ppsoupdotcom.wordpress.com/. Put together a few years ago now by a mum who experienced PP, with input from other mums and professionals. There is also a radio broadcast included with mums talking about their experiences but please take care listening if you are feeling vulnerable.

I had PP many years ago when mental health was very much in the shadows. So finding APP years later was so helpful in lifting unfounded guilt and shame. I realised that PP was not my fault and I had no choice when it hit.

Sorry for rambling, I hope you have support around you to cope with your grief as well as your recovery. Hoping and praying for you across the miles. 🌻