Postpartum psychosis

[WildRoseFinch]

I've had postpartum psychosis. I'm 4 months out from my hospital but still feel scared that it will happen again. I also don't feel the same in my body as before. I'm on the maximum dose of olanzapine and now I can't feel my muscles working during exercise and don't feel sore the next day. I also don't get tummy rumbles when I'm hungry anymore. Can anyone else relate to this at all? I feel alone.

Hi. What are feeling right now? Where are you right now?

Right now I'm feeling tired and like I'm living in some kind of dreams state

It’s completely natural to feel unsettled after going through postpartum psychosis. Giving birth itself can be such an intense, even traumatic experience. But when you think about it, there’s also something extraordinary about the process. The way our bodies are able to create and bring a new human being into the world is almost magical a true testament to the wonder of life and resilience. Medications like olanzapine can change how your body feels, which might explain why things seem so different, especially with exercise and hunger.
You’re not alone in feeling this way, and it can really help to connect with others who have gone through something similar. Take it one day at a time, and remember that it’s okay to feel however you’re feeling. You’ve already been through so much, and you’re doing your best which is more than enough.

I have also suffered pp (30 years ago now) but i was treated with ECT. My only options then were lithium or ECT so i don't have the experience of the drug you're on.

When i came home from the psychiatric hospital, i felt like an empty shell. Like my whole mind had been wiped clean. That was the hardest time.

I did return to work when my baby was 5 months old (mat pay was very short and poor back then) and i would say i was functional by then but i did not properly feel like my self or bond with dd til she was 18 months.

I looked after her really well and was not depressed but i didn't feel in tune with her if that makes sense - it wasn't coming naturally.

So - it's a massive thing you are going through and does take time. You will get back to your old self. PP is a self limiting condition (it would get better without treatment but obvs is an emergency to prevent harm to mum, baby or anyone else whilst in psychosis)

I went on to have 4 more children!!!! And no re occurence but i did put a lot of time and research into that and my treatment regime for future pgs.

Ps it WILL NOT happen again unless you have another baby. (50% chance if you have another)

Do not worry at all about that. It never happens.

I had post partum psychosis after having my daughter. I had it on and off from 3 weeks until 11 months alongside postpartum depressed. I went into the mother and baby unit at 10 months at which point it was treatment resistant. I was already on quetiapine for my bipolar and mirtazapine for the depression. They added lithium which kicked the psychosis into touch. It took more time and meds to sort the depression out. I was back at work at 13 months pp at first for 2 days a week but by 15 months i could do 4 days a week which was my new limit and only with Wednesday off. It took until 2 years to be back to me. I had vig therapy with the infant parenting service which helped with the bonding with my daughter and process the depression, psychosis and my extensive mental history
I have been stable for the last 2 years, at 3 years pp we felt strong enough to start trying again. It took 8 months to sort out meds during which time I had counselling with my HV about parenting a child with health issues and my own mental illness. I had a session with my partner too and it was really helpful.

I was 8 when I started with mental illness. 16-18 was a tricky time, I had a manic episode at 21/22 and completely lost touch with reality thought I could fly, had delusions of grandeur and did some reckless stuff. I was diagnosed with bipolar in 2015 I had an awful mixed episode (high and low mood simultaneously) in 2016 and believed the fate of the universe was on my shoulders. Every bad episode takes time to heal from but you will heal and you will regain faith in your body and your mind. Even with an illness that means I'm prone to severe mental illness and nearly 30 years since it started there have only been a handful of bad episodes. 4 months is that tricky spot, it's long enough from the episode that you feel stronger again but it still feels close and scary. You will get through this and there is a very good chance that you will not experience this again.

When is your next med review? They might be able to tweak things if you are stable. Once I had been home a few months I had my quetiapine dose reduced as they felt the balance was slightly off. They had it high to stop my antidepressant from making me high but they thought now I was stable it was possibly overly numbing me. They only dropped it from 700 to 600 so a small change but it lifted the fog. When I was in the hospital it was more important to manage the pyschosis but the longer I was stable the juggling act about what was the right combination shifted slightly.

Before having my daughter I had a 50% chance of getting severe depression or psychosis post partum because of my bipolar diagnosis. The risk is the same if I have another.

Interesting to read your story, @Superscientist

I should have perhaps added to my post that I did not have any mental health history at all. I didn't even get low mood or anything with my monthly cycle.

So, in my case, PP came totally out of the blue. And, I have never had any mental health issues since. It was a totally isolated episode in my life.

For someone like me with no MH history, I'd totally recommend the ECT. It worked very swiftly. I only needed 6 sessions over 3 weeks. I did not need any medication at all. I was too seriously ill at the point of admission to get medication. I was at high risk of harming my dd and self and was on watch 24/7. They did give me some haliperidol when i first went in and then sedated me until it was time for ECT. That zapped me back into reality right away.

The empty shell like feeling wasn't great but i did not lose my memory at all.

I was offered lithium or ECT for any recurrence after a subsequent pg and picked ECT again. But i never got ill again.

Ect is very person dependent. I was offered it when the lithium wasn't lifting my depression. The risk of potential memory issues and the impact that might have on my career meant they didn't think it was suitable for me.

Thank you for sharing your experiences. Thank you Superscientist, you are right, at 4 months out it's still close enough to feel scary. My next med review is next month, but I am seeing if they can bring it forward for me. I want to ask them to try lowering the dose slightly to see if I feel more in touch with my body as a result. I don't like feeling so numb at the moment. Good to hear things improved for you when your dose lowered. You went a long time without treatment, that must have been so tough.

Superscientist, can I ask what your symptoms were?

I had treatment but in the community. My bipolar diagnosis meant I was referred to the perinatal team in pregnancy. I had severe depression with psychosis. I didn't think my daughter was real then she was real but wasn't mine and then she had been swapped. It was hard to reach out because if the baby wasn't real then neither were all the people connected to her so the HV, perinatal team and the NCT group. I had a distrust for my partner as he wasn't pointing out that she wasn't ours so he must have been in on it

They increased my quetiapine and I tried 3 antidepressants at home. I would get grief moments when the depression was less severe and then I got a break from the psychosis but then my mood went down again and it returned. As well as medication I did a compassion focused therapy course and had support from my HV as well as the perinatal team. My daughter had severe silent reflux and multiple food allergies which weren't diagnosed until 4 months at which point she was crying for 16h a day. There was definitely a pattern in my psychosis being worse when she was being more challenging. I couldn't understand why I was being forced to look after a screaming infant that didn't exist or wasn't mine. I was first offered an admission at 10 weeks but my team were happy that I wasn't a risk to myself or my daughter so we tried everything we could in the community until it was classed as treatment resistant. This was in 2020/2021 so I wanted to avoid hospital if at all possible

I had the manic type of psychosis and believed my baby wasn't mine. I believed she was my (deceased) Mum's and i was getting messages through my mum's engagement ring to return my baby to her!

I was pacing around all night waiting for my mum to come and get her.

I was frantically working on codes to get a path to my mum. Obvs i was very noisy by night!! I had to go into a side room. I was high risk of killing myself and baby to get my baby to my mum.

They didn't seem to consider my career as a speech and language therapist when giving ect. They just had to take the fastest treatment option to ensure our safety.

@Anisty yes I think it might have been a different decision if my episode was manifesting in a risk to self or others way. I was stuck in the world of my mind but the nature of my depression meant I was physically dulled. The mixed episode I had during my PhD was agitated depression with some hypomania and was restless and had to be on the move to find the answers. Hearing messages in music. More of a whole body experience where as my post partum pyschosis was much more internal. If that makes sense?

It took 11 years and 2 degrees for me to qualify and to be a lab user I can't have any memory deficits at all. I have had my clearance to be allowed in the lab pulled a couple of times because of episodes. I was left with name and word recall issues after my postpartum episode from the depression and psychosis. It's only in the last 6-9 months that I have noticed this improve 3.5 years after having my daughter.

It sounds like a super tricky thing to experience, I'm glad you didn't have a repeat episodes afterwards. Were there mother and baby facilities then or were you separated from your baby?

Hi OP. Sorry this has happened. It is scary.

I have had psychosis and been on olanzapine before. Olanzapine did suit me best but still I had the side effects you experienced and in the end I just said no I can’t take this medication anymore. I have fully recovered now. Relapse free and not medicated.

Don’t be scared of trialling coming off medication. You sound self aware, and if you have an awareness of the psychosis it will be different from last time. You will know if it’s coming back.

It sounds weird but when I was coming off I found myself at a cross roads where I was having some psychotic thoughts and I could have chosen to be psychotic.

Choice sounds very strange in this context but say you have a psychotic thought and you know it could be a psychotic thought. Then I would just say to myself well that may be true, it may not. But how does it serve me to think that it is true. The conclusion was always it doesn’t serve me to think xyz. Regardless of whether it’s true or not I’m still here doing the best I can by myself and my baby and if it is true then someone else will bring that up and not me and then we can address it.

So it was a choice to park these thoughts as a ‘maybe’ and try to ignore them rather than chase into them spiralling if that makes sense. Eventually they just fizzle away.

The point I’m trying to make is you do have control to heal yourself and it will take time. You are aware now in ways you weren’t previously and these psychotic thoughts aren’t going to sneak up on you and catch you unawares like before.

If you feel they are creeping up and you can’t park them you can always go back on medication again. Olanzapine works incredibly quickly. So please don’t feel frightened that you have to stay on them. The NHS likes to keep you on them for around a year. Newer studies have been showing that’s not necessary in most cases.

You know your body and mind now in ways that others will never. So you can listen to it and don’t lose trust in yourself.

Goodluck

Thank you everyone for your replies. I'm going to try reducing my dose slightly soon.

I can't really relate to it being internal, tbh. It manifests in different ways. I was non stop talking by day. I was very, very active and full of energy. I never slept at all. Initially, no one really noticed i was ill. I was giddy and hyper.

But by day 10, i was totally detatched from reality. DH and i were only 26 and i worked for NHS. So DH had noticed there was something very wrong but i told him not to say anything as it would affect my job.

Fortunately, the Health Visitor arrived on day 10 and her initials happened to be JC so i thought she was Jesus Christ and told her the whole story about my codes and how this baby was not mine to keep.

She got the GP to me right away and he arranged urgent admission.

Before i went (which i was willing to do as i had to tell everyone the code!)
I got my marriage cert, birth certs, all docs and took them to hosp.

Packed no clothes or toiletries at all. Ran to next door and warned her not to let my in laws into my house as i thought they would burn it down.

Obvs she was stunned by this!

And away i went.

I was on a general psychiatric ward but they put me in a side room with my baby and i continued to breast feed. Well, they put baby to my breast as i was too busy cracking my code. I was having visual hallucinations.

I was totally crazy!

Ah yes i can see why you wouldn't want to risk your memory after working so hard!

I was in no fit state to consent to anything but they explained to dh that ect was best for me. Lithium was an option but no bf on lithium and it would take over 6 months. I suppose my blocking a bed for that long was a factor too.

They made me sign my own consent form. I mind shouting 'no! No! No!' but they explained they give a muscle relaxant and my body would not convulse. I signed.

I was only an in patient for 3½ weeks. It really soon brought me back to reality. But coming home was hard at first.

Actually i think i believed nhs was conspiring against us. Must have been terrifying for DH.

Did you have a numbness is your body, like you were unable to feel your stomach rumble or your muscles straining? I can't feel bloated when I eat too much now and muscles don't ache after exercising.

Hi @WildRoseFinch . I don’t have personal experience but a friend had PP and I know about this great organisation called Action on Postpartum Psychosis- https://www.app-network.org.

Please take a look, they can help. Take care.

Not for me @WildRoseFinch as, after the ect, i never needed any meds at all.

I had a very different experience with a short, sharp illness. I think i did feel very numb, but not a physical numb. More like i was not properly in the world.

I remember feeling very overwhelmed and out of sync with everything. Small tasks (like having a bath on my own) seemed monumental.
I had a home help and CPN. I lost all confidence. The only thing i could do better than anyone else was breast feed. My baby was better with anyone else but me.

I didn't like being on my own with dd. It was like ect had wiped my mind and i had to relearn everything. But i did get back to work when she was 5months and faked it pretty well. I worked on the acute wards. With neurological and stroke patients.

I was much better when dd neared the year old. And fully back to my old self by 18 months.

I had a lot of councelling before my 2nd baby. It was a huge thing to go through.

I flew under the radar for quite a while because I looked normal just depressed very numb but my thoughts were crazy. The psychiatrist was much more apt at probing how I was doing and the psychotic thoughts came tumbling out whenever I saw her. I've been in your state in previous episodes though. It's scary what the mind can do.

That's interesting. I was told lithium typically takes 3 weeks to work. I need the highest dose so it took a bit longer. The pyschosis was gone in 3 weeks and the depression started to lift after 6 weeks. I was in the mother and baby unit for 10 weeks. I needed to stop breastfeeding either way as it was making me acutely unwell. I collapsed the day before I stopped due to the impact of breastfeeding. I was in a restricted diet as my daughter was allergic to the food I was eating.

@WildRoseFinch I don't experience that on quetiapine but I had different side effects when I was on olanzapine. I had to make the switch from olanzapine because it made me dizzy every morning and I had to lie down when waiting for the kettle boil to make a drink and then drink it sat on the floor. Have you had a look at the patient information leaflet to see if there is any of the known side effects that feel similar

Maybe treatment regimes have improved since 1993, @Superscientist . My psychosis was actually gone after my first ECT. After that first one, all the mania, delusions, hallucinations were gone and i felt flat as a pancake.

I just had the haloperidol on admission and that didn't seem to do much. They let me rant on until just after 1 in the morning as I thought my Mum was coming for the baby at 1. Then they sedated me. I don't think it knocked me out for long as i recall trying to find a bit of my code in a wordsearch later and my eyes were closing!!

The drug mentioned on this thread i haven't heard of but treatments are bound to have come on in 30 yrs.

I was just very glad i had ECT as it was fast and there were no side effects at all in my case.

They definitely said 6 months for lithium but maybe that was the length of time i'd be on it in total. Maybe i'd have improved over the 6 months.

I have just had a quick scan over when ECT is indicated and it still seems to be used for severe psychosis where there is a risk to life.

I definitely fitted that criteria. They must have just gone for the treatment that would snap me right out of it asap.

And it did. I certainly was a danger in the hosp and was watched at all times.