Postpartum psychosis medical history,... - Action on Postpar...

Action on Postpartum Psychosis

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Postpartum psychosis medical history, risk factors + reacurrence...

Jlou84 profile image
Jlou84

Hi I'm just interested to know, if anyone has any theories about why they got PP?

I had no mental health diagnosis or family history of PP/Bipolar (known about anyway, Grandparents have all died). I was diagnosed with Dyslexia late on, (processing not spelling.)

I wonder if anyone had PP with their 2nd/3rd.. child, following a 'watch and wait' approach?

I haven't responded well to anti psychotics/depressants, I got severe depression following PP( but medication side effects outweighed any benefits), and I guess I'm trying to assess my risk of recurrence of PP (+ work/life burnout) with future children and in my career (caring profession).

I may be putting 2+2 together and making 6 but thought I'd ask...

Obviously no obligation to reply. Just trying to gain clarity for myself and weighing up future options/decisions for mine and my families future...

Thank you for your time + support. 🙂

17 Replies

Hi there,In 1995 I had my first child the birth was a long and not a great experience, I went down with PPP when she was 11 days old , ended straight in a general psychiatric hospital for a month, another month at home then a clinic me and baby could go together... in them days not much was known about PPP so care wasn't good in the psychiatric hospital, which has had lasting effect though came out as PTSD 20 odd years later.... my second child I had 3 years after my daughter, I went and saw the psychiatrist before we decided to make him... the first birth was, out of the blue PPP... when I had my son I didn't have any medication and things went well with no PPP and was fine.

I have found out I have adverse reactions to medications can only just about tolerate the one I am on now for my PTSD at a very low dose... so wonder if some of my symptoms when I had PPP was the drugs as have tried some of the medications I was on and bad reactions, but they didn't care then.

I had been well for 20 years, I had been told by the social worker when I had just come home from the clinic that I would get PP again at menopause didn't take much notice, but as the years creaped up on me it started to worry me and fear built up, also I had been to a hospital appointment with a very abrupt consultant about tummy pain, he upset me so much it seems to have triggered the trauma of the past treatment at the psychiatric hospital, which had always been there but nicely locked away until then . To become terrified of doctors hospitals and being put away again.. really thought I was going made... after a year met my gp I have now.. who realised things were a lot deeper than just plain anxiety and possibly menopause symptoms ... I was assessed and they diagnosed PTSD from the psychiatric hospital, that had been triggered by the consultant.. I think there was probably menopause symptoms too but the PTSD out weighed that..

I feel the trauma and when we go towards menopause need to be talked about with us mums who have experienced PPP especially when it has been out of the blue with no other experiences of mental illness as it is very overwhelming not having anyone to talk to , what to do if things start going on and so it is less of fear of the unknown as it was with me... they did check me for psychosis but I was ok... if I had had someone to talk too about my fears I think I may not have let things get so far to breaking point... my gp has been there for me and now in secondary care, waiting for talking therapy and got my records to hopefully make some sense and closer to what happened in the psychiatric hospital.

Hope this helps you

Esther

Jlou84 profile image
Jlou84 in reply to guinea1

It does incredibly so, thank you. I am in the process of obtaining further assessment as we speak from a specialist team. It's been a fight to get support and I've been let down and made worse again but having got second opinions and gone private for some of it. I think we may finally be getting somewhere. For more info, see my reply to twobabies below.

I wish you the best with your journey and can only pray you get the right support.

I've learned the hard way that Trauma counselling not medication is what helps me, as I have negative sedative/low mood reactions to any meds I've tried so far.. unfortunately it seems very trial and error. I sometimes feel like a guinea pig with my family watching over the experiment and being affected by it. But this is often just the way of mental health support. I have to realise it will take time and you can't just fix stuff, the right way the first, fifth or even tenth time....

Wishing you all the best, Jx

guinea1 profile image
guinea1 in reply to Jlou84

I have read all these replies with great interest can relate to them, with my first baby it was a long labour and I had an epidural which ended with a vontouse delivery... the nurse who did the epidural wasn't very good and seemed to struggle with my veins and I had small gaps between my vertebra, she kept saying wiggle your toes as you can become paralysed, I was panicking but too afraid to say stop or move, when I got llI started reliving this and saying I couldn't move or feel my legs I really believe this had happened... also had a very abrupt doctor doing the vontouse when I became panicky just said she can't feel anything... but could hear and feel it.... the midwife shouted at him I wasn't relaxed... baby was delivered 8.10 am , it was very rushed to put me on the ward which was busy and visiting times where champagne was being popped and just noise.. after being awake most of the night I just needed to rest... I felt numb and think I was in shock to a degree after 3 day I went home , developing breast absesses in both breast and was really feverish, delirious doctor gave me antibiotics..breast feeding had been really painful and I was to anxious about the pain I couldn't feed her, having to give up brought devastation and felt so bad and had let down my daughter.... my mental health got worse until I ended up in the psychiatric hospital.. I really think the trauma around the birth brought the PP on.. plus the fever... and I have told the rest. When I had my son second child, I had made a birth plan and started no epidural, petherin was given and all went well, just the midwife who had delivered first baby hubby and me... having the same midwife really helped... he was born 6pm things were very different had a bath and time to relax before the ward, I had time to rest as evening... went home the next day.. and limited visitors... things went well. I did develop absesses again so stopped feeding as felt it wasn't worth the stress... I am glad I had the chance to prove to my self I could be well , we would have like a third but decided not to , just incase as had moved away from family so support would not have been there if things had gone wrong. I do feel that difficult births, poorly babies and things like being poorly with absesses etc has the effect for mums being unwell, but I know that there is hope to go one to having another birth with no problems.. I think keeping an open mind and taking a out fears etc helps... I kept with my team of midwives who looked after me through pregnancy, so they knew my history and what had happened the first time around and this did help me alot. I felt more in control. I agree with medication it is hit and miss... maybe look at what worked last time.. I have found talking to my gp helped also.. especially with any fears about hospital people.. I wish you all the luck with your journey, we are always very brave thinking about ather children after being poorly xx

Mummyanxiety profile image
Mummyanxiety in reply to guinea1

Wow it’s amazing how similar our experiences are and the onset of PP. Difficult 3rd stage labour and going into theatre as placenta wouldn’t deliver was definitely quite traumatic for me and then problems with breast feeding and fevers plus not sleeping. Good to know about the successful outcome with your 2nd as we are weighing up whether to have another baby. I similarly have a great GP who has been so helpful with my recovery. Thanks for sharing your experience. x

Jlou84 profile image
Jlou84 in reply to Mummyanxiety

Oh I haven't had a second, maybe I was unclear. I was just trying to ascertain what went wrong with my Hypnobirthing labour and as I couldn't face going back to the hospital, after the experience and a really unhelpful response following complaints made at the tome. I decided to talk to some doulas I found via positive birthing on Facebook and attended a group called Informed birth for an informal debriefing. The doula was able to explain what the staff should have done in my labour and why for instance I didn't have the feeling to push and how I'd managed to overmanage my contractions to the point of it becoming an emergency delivery at the end (I was told you need to get baby out now or you'll have to go to theatre (luckily I got them out) but as I explained postnatally things didn't go well for me or them. The doula was able to 'objectively' unpick the process and provide reasurrance that if I experience similar issues due to my babies size and my anatomy there are ways to deal with it calmly. I now have a fear of childbirth and they also advised me of a treatment they offer that can help me overcome that fear. It's called the 3 step program, rewind process using guided meditation, you can find more details on the Traumatic birth recovery website. I don't know how evidenced based it is as it's not something I can contemplate right now, as I need to get a bit better first and decide whether further children is the right thing for our family, based on my risks and our support network etc. (We don't love near family...) I hope you find the right support tho! I'm sure your aware APP have a guide you can refer to help plan for further pregnancies but if you would like any further advice/support, please don't hesitate to ask. Take care! Jx

Jlou84 profile image
Jlou84 in reply to Jlou84

Sorry just realised your reply was to guinea1 yes I agree, so great there is a silver lining and people have made their second baby experience positive + work for them with the right care and support.I hear sometimes it's healing to have a positive birth with the second which is nice x

Jlou84 profile image
Jlou84 in reply to guinea1

Hey I had very similar traumatic care, again not being able to get veins, ride, unprofessional, inexperienced, stressed staff. My baby had tongue tie and Breastfeeding took months to be fixed and once it had finally been diagnosed after weeks of tongue curling, agonising pain. It couldn't be treated because of his sepsis and then because of mine, risk of infection due to open wound caused by the cut meant. I continued to express and feed until finally I was well enough for then to do the cut that eventually meant I could feed my baby without pain. I later learned the pain of feeding a baby alone is enough to give you postnatal depression and along with my unresolved preexisting risk factors (social not medical) and a traumatic birth and postnatal care both on hospital and in the MBU, it was like my brain called enough! It took 3 mnths to get over the PP but after 2 mnths of being out, it took another 6mnths to get through depression bit then the pandemic hit and I returned to a stressful work place and i felt like I was back at square one, this time burnout and a kind of identity crisis.

I will get through it, I just have to acknowledge sometimes it takes longer than I'd like to find the right care and treatment.

Thank you for your support + reassurance that if it's what I chose (further children) there is a way to feel empowered. X

Naomi_at_app profile image
Naomi_at_appAdministrator

Hi Jlou84

Thanks for your post, and for being so honest about the tricky 'weighing up' process that you are going through.

In terms of your initial question - we know from the research that 50% of women have PP out of the blue, with no significant history of mental health problems/family history. So for many women, the cause of PP is really not known. Research suggests that there is not a link between previous trauma and PP - however, as guinea1 describes in her post, for some women there is a lot of trauma to process after a first episode of PP.

You wondered about people's experiences of a 'watch and wait' approach and I hope it will be helpful to share a bit of my story. I had PP after the birth of both of my daughters in 2005 and 2011 - with baby #2 I was supported by a specialist perinatal team during pregnancy. I wanted the opportunity to 'watch and wait' as I had found medication very sedating, and reflecting back I think I had a certain optimism that I would not become unwell again. My team were very supportive, though clear about the high recurrence risk. My relapse plan stated what my early warning signs of becoming unwell were - and that I would have antipsychotic medication pre-prescribed and ready with me on the maternity ward to take if my partner, midwives or I felt that symptoms were recurring. My postnatal care plan requested a private room, and support from midwives to ensure that I slept as well as possible in between feeds.

It was an anxious time for everyone, midwives included I think - as baby arrived at 36 weeks via an emergency C-section. I did have a relapse - at about 7 days, so I got in contact with my team to advise on the dosage of antipsychotic medication to start that day. Symptoms reduced quickly and I made the decision to come off meds at about 3 months. A few months later, I sadly experienced a really severe psychotic depression and was in and out of hospital for the following 9 months. With support from a really good community psychiatrist, I did make a full recovery and things were returning to some sense of normal by the time my youngest was around 18 months.

Reflecting back now, I think it's hard to say if the outcome would have been different had I taken antipsychotics from the end of pregnancy/or for a longer period. There were extra stressors with my second baby being born early, and also needing care in the NICU. As with all mental health conditions I feel PP is affected by many factors - biological (hormone changes, genetics, medication), psychological (experience of birth, experience of motherhood, other stressors) and social (support networks, relationships, work stress etc..,)

However, the majority of women I know through the APP network who did take preventative medication have remained well. And on balance, I do look back and wonder if a combination of my optimism, baby being ill and not having specialist postnatal care meant that I did not manage my risk of recurrence as well as I could have. It was a really tough journey for my husband and older daughter, and we are so grateful that I made it to the other side.

I can absolutely understand the process of thinking things through that you are embarking on. It's not an easy one, but we are here at APP to support you and the forum is a great place to hear experiences from different women and families.

APP have produced a guide to planning for pregnancy which I hope will be helpful if you do want to think about having another baby - app-network.org/wp-content/... It can also be useful to talk things through with a clinician, and there is an NHS service to offer women at high risk of PP pre-conception advice with Prof Ian Jones app-network.org/what-is-pp/...

Please feel free to keep asking questions as you go forward - we're here for you xx

Warm wishes

Naomi

Jlou84 profile image
Jlou84 in reply to Naomi_at_app

Thank you for your honest reply, I think that hopeful approach right now is the only thing getting me through this difficult time. If I lost that I would never try for another child. Trying to find balance in mental health and life in general is so difficult and you can only work with the information you have. And with PP there isn't much factual stuff to go by, if you don't fit into their typical criteria.

Hence it's tricky to make a truly informed decision. And yes hindsight is wonderful, if only we had a time machine to re live certain moments in life and make different decisions or taking different pathways.

I guess that's why I reached out to see how others managed this difficult decision as we can only learn from our peers, as a rare disease, this info/advice isn't exactly passed down from previous generations that barely even discussed mental health.

This is why APP is crucial for us and future generations, so I thank you for sharing and helping all.

I hope I can make the best decision for my family + (potential future family) but I also have to let go of the fact it may not work out for the best and as long as I go into it with my eyes wide open, expecting all possibilities as I did birth. I hope + pray that all my research and reaching out will provide the best outcome possible.

Please see response to other members in this stream for more insight into my situation if you like. Every jigsaw piece helps to build the whole picture right?! Even if it does take days, months, years to build, eventually we will finish the jigsaw and we can only hope the journey was worth the end result and enjoy the process!

All the best for now and the future, thank you! Jx

Twobabies profile image
TwobabiesVolunteer

Hello Jlou84, definitely good to consider pros/cons. Interesting you ask about what we might think caused PP, I know there is no set rules research wise but in my own experience am pretty sure the main things were extreme lack of sleep and stress. I developed Ppp 6weeks after the birth of my twins. The sleep deprivation started two days before the birth as I had gestational diabetes and I was to have an early csection so they wanted to give me steroids before that which meant waking me every two hours to check my blood. One of my daughters had a serious heart condition which was discovered at scan so she was transferred to another hospital for heart surgery my other was in special care were I gave birth. We never went home but when my special care baby got out moved to heart hospital it meant lack of family support, extreme stress meetings everyday etc. Etc then a downward lack of sleep while I became obsessed by breast pump expressing ( following the plan of the breast is best nurses at special care hospital). The lack of sleep and stress was so much I have no doubt if I was to be in similar circumstances I was become very unwell again. However I would hope with hindsight I would be better with self care and get the support required around me. It’s very hard when you are looking after your babies you definitely take second place as a mother I thought anyway but you need to be well to be able to mother the way you want. I haven’t really considered another baby so can’t share on that but great you are considering everything, maybe your doctor could arrange for you to speak to maternity team mental health planning see what they think options would be just so you can talk it through. Sending hugs from a fellow ppp survivor xx

Jlou84 profile image
Jlou84 in reply to Twobabies

Wow thank you for your reply, it reads fairly similar to my experience. I guess I am trying to make connections as even though there is the APP forum, everyone's experience is so different, detected + treated differently.

And as there is no definitive cause, other than the research evidence of associations between PP & bipolar/poor mental health and lack of sleep. It feels hard to make an informed decision on how best to move forward safely.

I too had a traumatic delivery but was praised for handling it well with Hypnobirthing, thinking we'd escaped the worst of it, that evening my baby was rushed to the special baby unit, needed oxygen etc. He was there for a week and I too being a health professional, was adamant they would have breast, looking at it, to the detriment of my own health, as I averaged 3 hrs sleep a night and then when they were to be discharged I collapsed and was marched back to my side room for my own sepsis treatment. I still to the day breastfeed. You might say I'm stubborn, or stupid maybe. I wanted the best for my baby, especially after they had experienced such an awful start to life. In the MBU they weren't supportive or equipped to support BF mother's, I pumped and feed and probably exhausted myself further. I recovered but was good for a month before I fell into a catatonic depression, not recovering for 6 months. I returned to work and then I suffered 'burnout' again putting others before myself.

This experience bought back past unresolved traumas that I'd asked for support to process pre birth but received therapy from a non specialist that made me worse.

I have little trust in healthcare as a result of my pre birth, birth and postnatal care for myself and my baby. There were medication errors, dangerous care, and I one point I feared for the safety of my baby and myself due to the poor standards, in a hospital that I'd picked sue to its excellent CQC rating. To say my family were let down, would be an understatement. They knew I was a health professional and it seemed to disguise how bad my mental health was.

Hence why I struggle to decide how to move forward for the best. I struggle to put myself first in terms of care and as a parent you are second to your baby.

And the staff didn't help to encourage that balance during my fortnight stay.

I pleaded to be discharged with oral antibiotics as I was going stir crazy in that side room, not seeing the outside world. They'd induced an isolation period before the pandemic even existed. And no one heard on acted on mine or my husband's concerns about my mental health, instead they focused on my sepsis. I was discharged only for the PP to occurr a day after and as they say the rest is history.

Thank you for everyone's support.

The sadness is, only I can make this decision (along with the support of health professionals I struggle to trust) and it's going to be one of the hardest I have to do and I don't want history to repeat itself, obviously. I will continue to do my research and reach out, thank you! X

Twobabies profile image
TwobabiesVolunteer in reply to Jlou84

Wow, yes I also felt I was going crazy in the hospital parents accommodation. It was 30 degrees. The room was 28 with a fan, i couldn’t stand it. It was a tiny room with two single beds with my daughters cot just fitting between them and no more. The kitchen was shared so even getting to it in night to put breast milk in fridge was a nightmare, do I wake and take my baby or run out the room down corridor. It was cramped , hot and hell. But it was close to my other sick baby so I how could I go home and even if I did how on earth would I manage to get one of the twins to the hospital travelling every morning I was so sleep deprived. The bleeping noises of intensive care stressed me out so much. The environment was so so stressful . It funny I still find the supermarket now stressful for all the bleeps! So interesting you say you felt so claustrophobic when you treated for septis I definitely found the physical environment played a part too. And that knowing you need to change that, and what you doing with the impossible feeling of what you want for your baby. And trying to be the best mum you can. So hard, I think there are definitely a few people with birth trauma that add to it. Lack of sleep a form of torture. It’s really hard when you don’t agree with professionals that are treating you, and it sounds like you were not heard. Which is so frustrating, it amazes me rarely people ask what you thinking/ feeling and why. When I was psychotic everything had a rationale in my head, had a reason for all of my odd behaviours. Hey ho it’s nice to be in a position now to tell the tale. Sorry you were let down, I guess it doesn’t mean you would be again. Let them know your fears and see how it goes. Sending love and solidarity. X

HelenMW profile image
HelenMWVolunteer

Hello Jlou,

My episode of PP came out of the blue in 1988. After recovery, 3 months for me, and once I felt a bit stronger I looked into why I might have suffered as I had no previous mental health issues. There was something called The Edinburgh Screening Scale back then which was developed to try to work out who might need some support. I had just moved from all of my family. My marriage was under strain. The birth was very traumatic and I had high doses of pethidine which made me feel very unwell. It was my midwife who identified PP.

Anyhow. I did go on to have two more pregnancies in 1996 and 1999 and it was wonderful to feel well in the post natal period. I did liaise with as many specialists as I could in the area of PP and I chose to have epidurals. I had made contact with a Mother and Baby Unit just in case. My mother moved in to live with us and this enabled me to sleep, sleep, sleep!! She stayed for 10 days and it was a good time for us.

I hope this is helpful and I am very aware that we are all unique and have different things going on at the time.

Hope this is of some help! Keep us posted and all the very best.

Jlou84 profile image
Jlou84 in reply to HelenMW

Thanks Helen I really appreciate your reply and insight. I am so grateful for this community. Please see my replies to others, if it in any way will help you! X

Hi JLou84, thank you for raising this question. My experience: PP in 2019 with my first baby, PP also out of the blue, no previous family or mental health history. the only history i had was of extremely painful periods before birth, which could explain that my female hormones were in some unique balance, not standard, resulting in unique outcome of labour- PP...

i had traumatic birth (doctors mistakes and a lot of human factor turned my well planned birth into a horrible experience) and it made me physically in pain and emotionally angry.

i had early (starting from day 2) and excessive lactation which made it almost impossible for me to sleep ( i would either bf every two hours or pump the excess of the milk, otherwise i would have fever)

and i had been overwhelmed emotionally, i can say i was euphoric from the event itself- meeting my daughter (too happy and too excited to just relax and chill).

i think in my case all of that contributed to the severity of PP... kinda fuelled it, made it impossible to overcome early symptoms in the beginning just by taking a good sleep...

however i remember myself having a very bad reaction to epidural, i felt so weak as if my spirit and my life energy left me... doctors had no clue and didn’t pay attention.

and after the first 40 minutes after delivery, right about when epidural was finishing its effect i started to feel really weird - i was talking to hospital staff but also i couldn’t understand who was talking to all of them... as if i was listening to myself from the sidelines. as if there is a partition in my head . (doctors said that i’m just tired and gave me valerian root)

so i guess for me this weird sensation was the first sign of something going totally wrong with my brain.

could it be my brain’s reaction to epidural? i don’t know. i usually respond to medication in a weird way, with all side effects possible.

so i still think that epidural may be the case for me...

eventually after evaluating my psychosis as reactive, manic and curable, my mental health team said that in my case it might be all hormones- estrogen meating prolactin...super high prolactin levels (when it was measured in psychiatric hospital my prolactin was 3 times as higher than normal)

could it be prolactin? again no answer...

my plan for the next baby is wait and watch, maybe i will just take the anti-lactation pill right after birth and see how things would develop.

and i guess no epidural, but i don’t really know how being in too much pain can impact dopamine, maybe even worse

im not from UK, and where i live there is zero knowledge on PP... while i was looking for info i was going through dozens and dozens of stories of women with equally or even more traumatic birth experience or with babies having huge difficulty sleeping- and i didn’t see any correlation, so many mothers going through hell during first weeks- and still no PP, so i guess probably the onset of PP is still more hormonal/random rather than social

hugs

Hey thank you, for your reply. I had a very similar experience in terms of feeling high post birth despite having had a traumatic delivery (which I over managed using Hypnobirthing). No epidural for me but I also couldn't sleep as I was very chatty and my baby for the first week was in intensive care. Two weeks after I got out, I had that similar partition you spoke of, feeling like I could understand people's words but not be able to detect their emotions. It was very odd, like I was not connected to the earth. I felt floaty and the opposite to grounded...

I tried to explain it but at this point my friends were starting to worry and that evening I self diagnosed myself with PP after compulsively writing my theories down for Rob and not sleeping from 9pm-4am and then going straight to A+E after I spoke to the emergency midwives with my concerns. I drifted in and out of lucidity. However my lucidity was filled with paranoia of staff taking my baby away, if they deemed me and my husband too unwell to care for him...

I know depressions, even situational is linked to PP, which I had from work.

However I do believe there is a hormonal element that is in desperate need of more research. It's the uncertainty of its cause that really upsets/angers me and the poor health care I received that put my life in danger didn't help!

I do not react well to medication either, which is why I birthed without even gas and air, just a TENS machine, a broken water birth and a Paracetemol! 🙄

I know limiting stress in labour helps lessen PP so I would probably opt for a home birth as I can select the staff I'd like to a point, maybe have a doula and keep a relaxing/empowering environment as much as possible. I just want to learn from my previous experience as much as possible, without having to retrain as a midwife lol x

I wish you all the best!

Mine came in when I immediately stopped breast feeding didn’t know how to wean properly just stopped. When googled post Partum psychosis and breast feeding it fitted. I’m convinced due to that

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