PP diagnosis and struggling three wee... - Action on Postpar...

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PP diagnosis and struggling three weeks after discharge from MBU

25 Replies

I'm not sure whether this is the right place to seek help and support but I feel I'm not getting the kind of support I was promised after discharge from my MBU and am confused about my new diagnosis. My daughter was born in January and a couple of weeks after she was born she was discharged from ICU and we were sent home. I developed some very strange thoughts including suicidal ones and was constantly in a state of anxiety. After an admission to the post natal ward (who diagnosed GAD and PTSD related to the birth), dealing with the home based treatment team (who diagnosed PND and birth trauma) and being admitted to an acute ward (who again diagnosed PND and GAD) I managed to arrange my own admission to a MBU in Wythenshaw (three months after the birth). It was here that a consultant diagnosed post partum psychosis due to thought disorder. I was on the ward for 9 weeks and treated with various antidepressants and an antipsychotic olanzapine. I was discharged but had poor/non existent support from CMHT and ended up being readmitted two weeks on after a trip to A and E. Here I spent another two weeks and was seen by another consultant who diagnosed PND and anxiety but after seeing me for just 5 mins discharged me and took me off olanzapine 20mg. Three weeks on from this and with some help from CMHT I am still struggling with my thoughts and had to fight with yet another consultant to be put back on olanzapine 5mg to help with what the first consultant said was thought disorder. I'm just wondering whether anyone is still struggling with their thoughts and anxiety after discharge or whether it's just me. I feel like I have had 7 months of hell and just when I think I am getting better (after a week of good days) I wake with panic and very confused thoughts which only fade when I take a diazepam or sleep. Obviously I can't keep doing this forever so I'm wondering whether anyone can give me advice or support. Something I feel has been lacking in this area.

25 Replies
Lilybeth profile image

Hello bethanylj

You have definitely come to the right place for help and support. All the mums here have had PP and recovered but some mums you will 'meet' on the forum are still on that journey. Thanks for sharing your experience ..... the key is getting the right diagnosis so it's good in a way that you were eventually diagnosed with PP although it is a very traumatic illness.

I was under general psychiatric care with PP many years ago but there are mums here with experience of MBUs and up to date medications. I think 7 months is very early days after PP and there are days which will be better than others. Rest assured with good medical care and support you will fully recover and feel much better. I don't know if you have seen the APP Insider Guides, "Recovery after Postpartum Psychosis" and "Postpartum Psychosis - A Guide for Partners" app-network.org/what-is-pp/... which might be helpful?

Try not to worry .... we are all here to lean on.

bravesurvivor411 profile image

Hi Bethanyli,

Glad you found this forum. It has helped me feel supported and heard since my PP diagnosis 2 1/2 years ago. I had a mentor through a local ppd group here in the US that gave great support too. She gave me the advice that when you are in the thick of the illness you just have to focus on taking it minute by minute then as you recover it shifts to hour by hour then day to day and finally week to week. When she told me this I was still very ill and I could see how eventually I wouldn't be living focusing minute to minute.

Later down the road when I was focusing on one day at a time and I would be terrified when I had a bad day that I was going to get sick again. It's a natural way to feel since we all went through so much trauma. But then I realized bad days would pass. And good days also pass. Each day is different.

I haven't shared this before but the concepts of AA (Alcoholics Anonymous) really helped. I'm not someone in recovery from substance abuse but some of their quotes and beliefs really resonated with me. Also podcasts ( they are free and easy to download especially if you have an iphone) mental illness happy hour was my favorite.

Take care

in reply to bravesurvivor411

Thank you so much for your reply. I have a string of good days and think I am better and then sometimes I wake up with a feeling of dread and I realise things are not over just yet. Here in the UK there is little or no support in this area and I feel isolated. The number one charity In the UK and go to place for support was 'said' to be PANDAS but I have phoned them three - four times for advice, support and to say I would start up a support group in my area, only to be greeted by an answering machine and never get a reply. This illness drives me crazy as I never get an answer as to why it has happened to me and when if ever I will recover. It's such a cruel illness and leaves me on edge all the time, wondering whether I am going to wake up with the weird thoughts which leave me terrified each day. The thing with me is that I can't describe the way I feel, only that I don't feel myself and that I am not in touch with reality. Like I'm in a dream state and can't wake up, it's awful. The suicidal aspect of it scares me too as this is so out of character for me. I'm hoping people on here can reassure me that things do get better. I have taken things minute by minute, day by day and week by week only to be rudely awaken to the thoughts which I had months ago and that seems to propel me back to that dark place. I am taking medication and trying to live a healthy lifestyle but just how long does this illness last? X

bravesurvivor411 profile image
bravesurvivor411 in reply to

I can relate so much to your response. I had never experienced any type of mental illness myself before PP. I have never not felt like myself but when I was ill I felt like a stranger which made me feel very alone. I was hospitalized for severe depression after I was released from PP which was very frustrating and made me feel like I would never return to normal. I definitely didn't believe others when they said I would recover.

Are you in counseling? I went thru 2 counselors then I found my the one I see now and she is amazing! I owe a good portion of my recovery to her. I saw her several times a month at first. Now it's about ever 6 weeks or so. I love counseling and know I will be in it for the rest of my life to stay healthy.

I'm not sure what medication you are on but the antipsychotic I was on for 6 months made me very apathetic and sleepy. Once I was well enough to transfer to a mood stabilizer I noticed a big improvement in my recovery. I felt more awake and more like myself. I know that antipsychotic have their place and are needed but they definitely are rough on us.

Do you journal? I was recommended to do that and I wasn't interested until recently and I see a lot of benefits. But it took time to come around.

I wish you the best. Each journey is different but we are all here to support you. Take care and feel free to message me anytime.

in reply to bravesurvivor411

Many thanks for your reply and support. Yes I'm currently three sessions into my counselling however I'm not sure it is helping yet as it's hard to describe the thoughts that trouble me. They are just dark at times which in turn brigs with it uncontrollable anxiety. I think they are flashbacks bit like a bad dream. They do however pass, either after a sleep or a walk.

I am on a lower dose of antipsychotic now and take it at night so I don't feel sleep with it during the day. Again I can't say for sure whether this is helping Me or not.

I'm 7-8 months into this illness now and it feels like the hardest thing I have ever been through.

I'm a teacher and had hoped to be back at work after the summer holidays which end in a weeks time. This also saddens me as I so desperately want to be better.

I did start a journal but burnt it when I had a good week thinking the whole sorry illness had left me. Wish I hadn't now as the illness hadn't disappeared and I would have continued with it.

Thanks once again for your reply and if you would like to stay in touch you can message me on here.

X X x

Lilybeth profile image
LilybethVolunteer in reply to

Hello bethanylj

I'm pleased that you feel supported by the messages here for you. I'm glad that your counselling sessions are helpful. I can relate to how hard it is to describe thoughts. I have read from my notes that during sessions with my psychiatrist I would ramble and sometimes never get to the point of what I wanted to say.

I know it doesn't feel like it but you are doing well. With my first PP I was in mixed general psych care and in different mental health units for the first six months, barely able to string a sentence together. I agree that it is one of the hardest things you will go through ..... I had never had a mental illness before PP struck so it was a living nightmare for a while.

I don't think you can rush yourself to go back to your 'day job'. There will be ups and downs but you will definitely eventually fully recover. Just take each day as it comes and you will get there. It took me a while to regain my confidence and place but I fully recovered. This is a unique illness borne by the bravest of women .......

Take good care and stay strong.

in reply to Lilybeth

Thank you for your second reply. I have been struggling the past few days with my thoughts but am hoping these fade on time. I also hope I am one of the strong women who can survive this! Many thanks and take care X

Lilybeth profile image

Hello bethanylj

Good to hear from you ...... don't worry here in the UK there is APP and we really are here to help you through this stage in your recovery. I think PANDAS offers more support relating to depression but PP is different as we have to cope with delusions and psychosis.

I understand how difficult it is to describe the way you feel because it doesn't make sense to anyone except us, as we have all experienced such weird thoughts. I can honestly say that with time and treatment the suicidal thoughts will fade. I had the same controlling thoughts which were treated and disappeared eventually.

I can assure you that things do get better and you will fully recover. Do you have regular appointments with your after care team to follow a care plan? We all have the same diagnosis but recovery time is different for each one of us.

You are doing well in such a short space of time. My first PP was in the 70's and I was hospitalised for six months but younger mums here have recovered sooner as treatment and medication have changed for the better.

Take good care of yourself and keep writing here if it helps to talk ..........

Hannah_at_APP profile image

Hi Bethanylj and welcome to the forum. I'm sorry you're having a tough time after your PP diagnosis, you can be sure of listening ears here and hopefully some shared experiences which can help you through.

I had PP in 2009 and it was such an awful time, not just the initial illness and being in hospital, but coming home and wondering when on earth I was going to feel better; I know just how you feel. It must have been hard to feel that you were not getting the right support and having to go back to hospital via A&E too, it sounds as though things have been horrible for you. Are you able to get in touch with your local care team to let them know how difficult you are finding things? Do you have a partner and close family or friends you can also call on? I found that being able to ask for help was quite valuable at least in the early days at home. I was lucky to have a great CPN but I realise not everyone has good links. Medication was also hugely helpful (although I didn't see it at the time, so it's good that you are finding meds to be helping you. I also took Olanzapine, in a reducing dose for a year).

I too had the feelings of steps forwards and feeling better and then steps backwards and being scared by the way I felt. I think it is quite normal in recovering from PP, it can be a long road. The biggest thing I struggled with was a complete loss of confidence and not feeling like I could see the end in sight. But you will get there. I found it helpful to write down a couple of good things that had happened each day and then look back on them and see that there were some good bits (although it often didn't feel like it).

Are you able to get out and see friends, or perhaps a local baby group? How annoying for you not to get a response from your local PANDAS when you have contacted them. Is there a Childrens Centre that can advise on other groups locally or other listings perhaps online? I know it can be really hard, and I hated my local group but it did me some good to just get out of the house. And I actually made a couple of good friends who I am still in touch with, as they didn't really enjoy the group either, so we made our own little sub-group!

I do realise that it's hard though and sometimes just having a day at home can be good too. I also enjoyed it when people came to see me, although not too much of course. How is your little one doing? I hope that you are getting some smiles and also some time to rest, I know what hard work it can be to do the day-to-day baby things when you are finding everything else a struggle.

Then links to APP Guides which Lilybeth has posted will give you some other tips and info. I guess, annoying as it probably is to hear, that the best thing I can say is that things will get better. The FAQ section of the APP website might also help with some more info, here is the link: app-network.org/what-is-pp/...

I realise that you will be wanting to know more, as I found that awareness of PP was pretty much non-existent in my local area. I spent time in a MBU a distance away and felt very isolated when I came home. What also helped me was trying to collate photos and create some memories with my little one to try and move forward from the awful time of PP. I found that people didn't really understand what I had been through, and it was only later that I could bring myself to try and explain. I hope that you are getting some rest and if you need to "talk" here, please keep in touch with us. Take care, xx

Ellie_at_APP profile image

Hi bethanylj

Welcome to the forum. I'm so sorry you've had such a rough time, with not getting a clear diagnosis, and also not really getting the support at home you need.

You are not alone. I hope you will find this forum helpful and reassuring, I'm glad you've found us.

Firstly having good days and then bad days was definitely my experience. And often, as you say for no reason. I struggled with anxiety and depression after the psychosis. My experience was that the good days just slowly got more and the bad days less until I realised it had been a few months since I'd felt bad. It always felt so awful though when the bad days came again, like i was going backwards, but you are getting better, and will be better, it's just a bit of an up and down road.

I also just didnt feel like my normal self and just desperately wanted to feel myself again and thought I never would. But I did, and even happier with a new gratitude for everything good in my life. You will too.

I found having a routine helped, just setting a few simple things / tasks for myself to do each day. Writing 2 or 3 things that were good about the day, as someone else suggested. Making myself do things like have a shower, or go for a short walk, even if I didn't feel like it.

As you see, you are not alone. You can write here whenever you want to.

Take care xx

in reply to Ellie_at_APP

Many thanks for your reply and support. It's really good to hear that others have experienced what I am currently going through. I find it hard to understand what is going on to be honest. This morning I woke up with terrible anxiety which came from nowhere which tends to bring with it my troubling thoughts and in turn upset in the form of tears. I dealt with it and rested when Harriet (my daughter) went to bed. When I woke the anxiety was gone and I have been able to get out of the house and I'm now wondering what I was upset about. I find this rollercoaster of emotion hard to handle as I never know when the anxiety will strike and what the trigger is. It's also hard to define or talk about my thoughts as they are dark and jumbled. Is this normal? X thanks

Ellie_at_APP profile image
Ellie_at_APPPartner in reply to

Hi Bethanylj

Sorry it's taken me a few days to reply. This was certainly my experience, what you have described. times where I felt well, and then sometimes for no reason, and sometimes I could track a reason, I would feel very anxious / down again. But hold on - the fact you're having good times (and that rest, for example, helped once - I found that the more I learnt what helped me, the better I could become, as I found tools that would help me get out of a dark place). This all means you are definintely on the road to recovery...my experience was that those good times just got more and more, and the dark thoughts faded.

Take care and I do hope you're finding help in this forum XX

Karysma7 profile image

Hi, bethanylj.

Just wanted to say that I can relate to the alone feeling. PP can be very isolating. I went through a very wild ride.

I'm not even totally sure what got me better. But I just hung in there, and the light finally broke through. Just hang on, keep seeking support and the light will break in. Like everyone says, it does get better.

I wish you well,


in reply to Karysma7

Thank you for your reply and support. I seem to have a string of good days and then hit rock bottom again with my thoughts and depression. Having never experienced any mental health problems before I find this very frightening. It's good to know there are others who have been throw similar. Friends and family just don't understand the everyday struggles I face X

Lilybeth profile image

Hello Bethanlj

It is very frightening to cope with your thoughts and depression can be so draining, which I had with my second PP. I had never had a mental illness either before PP so I was a bit bewildered as to what was happening in my head! I'm not sure about follow up after MBU care as I was under general psychiatric care. Do you have a CPN visiting or Health Visitor you can share your thoughts with? There are lots of ups and downs to this illness but it's good that you have ventured out .... sometimes being out in the fresh air can be very refreshing.

Do you think you might need your care team to review your medication if you are still having dark thoughts and are depressed? Perhaps you might consider CBT (Cognitive Behaviour Therapy) ..... just talking to a professional stranger about everything in your head? It's very hard for friends and family to understand how we feel ...... sometimes we find it hard to understand our behaviour or explain it!

Try to surround yourself with as much professional support and ask for help. I was mainly treated at home with my second PP but was well supported by a Psychiatrist, CPN and Health Visitor coming to my home. At one point I commented there were too many people in the house but following their good care and interventions I eventually fully recovered, as you will.

Take good care and keep writing here if it helps.

in reply to Lilybeth

Many thanks for your reply and sorry for not getting back to you sooner. I have had a couple of bad days but feel well today. I have support from my permanent cpn now and HV so hoping that will help. X

Lilybeth profile image

Hello bethanylj

I hope the support from your cpn and health visitor is going well and has made a difference for you. Don't worry about replying, it's only ever when and if you feel like it. :)

Take care .... we are all here for you.

in reply to Lilybeth

Thank you for your reply. It's good to know others are going through the same thing. I am going to a psychosis workshop next week to learn more about my condition. I hope it helps me to understand it more. As I've said below I seem to have a string of good days and then wake up really depressed for no reason, like I could cry for no reason. It's very disturbing. X

AnneMR33 profile image

Hi Bethany, how are you getting on?

Hi thank you for your reply. I have a string of good days and then seem to go backwards. Had a few rough days were my mind races and it then takes me a couple of days to get over it. I'm mentally drained at the moment from fighting the negative thoughts that follow my bad patches. It takes a lot to get myself out of the black hole. Are you ok? X

Lilybeth profile image

Helllo bethanylj

A psychosis workshop? Is that something your cpn arranged for you? I'm sure there will be lots of reassurance that your highs and lows are all part of your recovery. PP recovery has been described by some as a rollercoaster of emotions, which it is really. Some days you can sail through and others seem dark and endless. You are doing really well to fight your negative thoughts, although very draining. I hope your cpn is supporting you with coping strategies. Perhaps you might be referred for CBT (Cognitive Behaviour Therapy) which some of us have benefited from. Talking to a professional stranger about all the worries in your head can be a relief as we sometimes don't like to worry our families about our thoughts?

With my second PP I was in a black hole with depression for almost a year so I understand how draining it can be to lift yourself out of low moods. Treatments and medication have changed for the better so recovery is probably not as long today. I did fully recover eventually, as you will with the support of your cpn and hv. Do you have a partner or family to support you when your care team is not available?

Take care ..... we are all here for you.

Lilybeth profile image

Hello bethanylj

Just wondering how you have been and if your mood is lifting? I hope you found the psychosis workshop helpful and you are receiving good support from your cpn and hv.

Take care.

in reply to Lilybeth

Thanks for your reply. I'm doing ok. Had a run of good days with a few wobbles along the way. I keep getting flashbacks which upset me which I call blips. I'm hoping this is normal? I so want to be better but I'm not there yet. All I keep telling myself is that I'm doing a good job of looking after my daughter and am getting up each day, getting dressed and have something planned each day so it's an improvement from where I have been. I just have to keep soldiering on.

Beth X

Lilybeth profile image

Hello bethanylj

Good to hear from you. I just wanted to reassure you that It's very normal to have blips as it's early days in your recovery. I'm glad you feel you have improved. You're doing really well to motivate yourself to get out of bed to care for your daughter and plan the day. You're winning ........ stay strong and you will get there :)

Take care .....

GorillaMumma profile image

My mantra which has helped me is "Thoughts are NOT facts". Any thoughts that seem out of place is just your brain being a douche; it is not a permanent change in you. It will pass. Fill your day with positive things then you will start to have fewer of these strange thoughts.

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