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Action on Postpartum Psychosis

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Hello - I am currently 4.5 months postpartum. I've had a tough journey so far. It started with severe crippling depression along with anxiety that didn't feel like my normal anxiety, there was something deeper and ominous about it. Just this unnerving feeling like something was very wrong. I tried SSRI's and ended up in a drug induced delusion that I was dying and that it was killing me. I spent weeks pacing my house screaming, crying, banging on the walls wondering what had happened to me, every day felt like a continuing nightmare that I would never recover from. I deteriorated so bad I thought I was going to die no matter what as the pain was unbearable. I was afraid I was going to die from my own fear. It was unbelievable.

I checked myself into the psych ward for 9 days and its like a switch went off in my brain and I began to recover. I went from starving to death to eating 3 meals a day again and sleeping fine. I am only on Seroquel XR and Seroquel regular instant release before bed (150 mg) nothing more.

I feel as though I am functioning and now taking care of myself which I am forever grateful for, however I am still struggling with not feeling like "me". I feel like I cannot experience my great joys or excitements anymore, and that I am simply going through the motions. I am still extremely easily overwhelmed at small tasks and I always feel like Im in the clouds and this prolongs my depression. Its like a bad nightmare that ended but Im still half asleep.

How long did you all stay on your antipsychotics for and when you came off did you relapse hard? I know I am not myself because of the trauma and because of these drugs. I know I have to be patient and recovery is a process but I feel like I am mourning my old self and that nothing will be as it was ever again and this terrifies me.

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14 Replies
Lilybeth profile image
LilybethVolunteer

Hello Twhtwhts

Congratulations on the birth of your baby :) Welcome to the forum where you will find lots of help and support. I'm so sorry to read about your awful experience. You are doing well so early in your recovery to be functioning and taking care of yourself. Are you in the UK?

I had PP many years ago and can relate even after all this time how I felt with all the frightening delusions, which were all very real at the time. I was eventually sectioned and under mixed general psychiatric care. Thankfully I made a full recovery after months of very out of character behaviour. I'm sorry I can't remember how long I took antipsychotics for as it was so long ago and I was in hospital for six months.

After my second PP I did suffer what seemed like an endless depression so I understand how you must be feeling. Try not to worry at this early stage. It's hard to be patient but with good medical care and support you will recover and even feel better than you were. This is because it takes so much courage to overcome such a treatable, temporary illness ... all PP mums are amazing :)

I wonder if you have seen the PP Insider Guides? There is one entitled "Recovery after Postpartum Psychosis" with lots of helpful sections. Also, there's a guide for partners at app-network.org/what-is-pp/....

Make sure to surround yourself with support and take good care of yourself. We are all here to help along the way ........

in reply to Lilybeth

Thanks so much for your reply. A part of me is in mourning for my old self. I cannot experience great joy as I once did because I have a hard time accepting what happened and the fear is still with me. I am functioning so the clinical aspect of my depression has lifted but I'm still not me. I feel like I'm just going through the motions and I experience no great joy which makes me cry daily. Its like just existing but I can't feel the purpose as I once did. I know it's partly the medication as well. I'm glad it's lifted the heavy crushing fear but I do not like these lingering fears. I always think I'll be that one person who just never recovers because I'm not strong enough to accept the trauma of what I've gone through. I've always had anxiety, but I have never had real depression before so for me, I didn't even know this place existed. I did not know how bad the mind could truly get and now that I know I'm scared I'll be forever stuck in this place of no confidence and fear of going back "there".

Lilybeth profile image
LilybethVolunteer in reply to

Hello Twhtwhts

It will take a while to accept what happened as it's such a shock. When I was told some of the things I did it was as if my family were talking about a completely different person! I know it probably doesn't feel like it now but you will get stronger. Some days will be better than others but you will eventually recover. Do you have a Nurse or Health Visitor you can confide in about your fears?

I think many of us have felt as you do in the early days, which is understandable as you have been through so much already. Can you ask your doctor to refer you for counselling? This would give you an outlet to talk about your fears and be reassured.

Until PP and depression hit me, I had never had any mental health issues, similar to a lot of the mums here. Compared to me, you are doing really well as I wasn't communicating for a while. Hopefully you will find the medication is helpful and it will gradually lift your mood. There is a brilliant blog "PP Soup" which might be helpful for you to look at as it contains helpful, reassuring clips and info at ppsoup.com.

There will be other mums here to share their more recent experiences. Take it easy and try to rest when your baby sleeps.

Mudgette profile image
Mudgette

I promise you it will get better. You're doing so well and really well done for asking for the help you needed. I suffered with severe postnatal psychosis following the birth of my daughter in 2016. It was terrifying, I didn't enjoy anything, all I had every wanted was a baby and I just felt so guilty all the time for no real reason. I stopped enjoying everything, I cut myself off from everyone, I was terrified that if this was what motherhood was going to be like I just couldn't do it. I was convinced I had killed my baby. Even the midwifes were saying 'she's the healthiest baby on the block' but nothing anyone said helped, I was just super paranoid and not myself what so ever.

I've been out of hospital for 18 months now and it's a journey but it's great. I think that when you go through something as terrible as we have you're almost a better mum and more conscious about everything.My daughter is a healthy happy two year old (just) now and I couldn't be prouder.

What really helped me was going to mum and baby groups, however unnatural it felt. Finding other mums was great and made me realise that a lot of my thoughts post postnatal psychosis were normal. I don't think anyone feels like themselves after having a baby, it's life changing. It can be really shit. It can be pretty awesome when you're baby looks at you and thinks you're the best thing since sliced bread. It's a journey and my god it's tough but it's worth it.

Talking is great and i'm so glad you've shared on here. It's really brave.

Anything you need let me know.

All the best and lots of love.

xxx

Chick44nzrn profile image
Chick44nzrn

Dear Twhtwhts

You are going through such a hard time of it right now and while in recovery it’s difficult to remain positive or confident I know . As well as the ppp you probably are going through a post traumatic stress of what has happened as it’s a big shock esp to those who have never experienced a mental health crisis before as well as birth of a new baby , lack of sleep etc.

You will recover and you will get back your old self but wiser ! You should look after yourself such as putting aside time each day for relaxation / music / mindfulness / massage or whatever you can and which helps relieve the stress.

That feeling of dissociation ; not being quite in the moment you describe is very common but it gradually goes as you recover . It takes time but you will recover . Your GP or health visitor might suggest some psychology or counselling input which can be helpful . Talking about these things does help to organise a recovery philosophy .

Take care and remember we are here for you . Warm wishes Denise

kcha profile image
kchaVolunteer

Hi. I'm sorry to hear that you are struggling. If you think how far you have come since the early days after your PP you are doing well. As hard as it can be, try and have hope and make the most of this forum by reading about other people's experiences and what helped them. Remember that recovery is a journey and you are already on your way. Best wishes xx

Your story is very similar to mine and your reply to Lillybeth also resonates with me. I started with crippling anxiety, then psychosis followed by a very deep depression. I’m two years into this journey and get very very cross with myself that I can’t do the things I once did. I also find things take twice as long to do whether because I have a two year old or because of the ECT I had. On a positive note I am better than I was and am making progress to go back to work. The thing I now struggle with is fear and deep thoughts about what the brain is capable of, perhaps as you described in this thread. You are doing so well to reach out 4.5 months post partum and be assured that everyone’s journeys are different and we all do recover, it just takes time x x

Much love 💕 Beth x x

Wardie profile image
Wardie

Hi , congrats on your baby ,,I was nervous to start seroquel Xr again because I remember feeling tired and not myself but taking them again was the best thing for me ,,after a bit of time when I was used to them I felt great I stayed on them through my pregnancy and after and as I haven't relapsed in 5 years I'm slowly coming off them now I'm actually more nervous not to be on any medication,, so far coming off them isn't so bad every 4 months I was being reduced and each time I reduce 50mg I felt a bit dizzy but after a couple of weeks I was ok and used to the lower dose

the odd time when I get bipolar thoughts I control them by saying there not realistic but if I ever feel really bad again ,I will be going straight back on them I don't want it to snowball and end up in an episode again

Just take your time coming off them don't put pressure to come off them too soon

Good luck

Hello Twhtwhts,

welcome to the forum and congratulation on being a mum and having a gorgeous baby.

You know each moment is a pleasure to be with my boy. He is my life and purpose. I am a proud mum and a happy partner.

I am convinced that my big man has saved my life as I was tremendously poorly in a psychiatric mixed gender unit...This August it is going to be 8 years ago since PPP took hold and affected all my loved ones, but especially my partner.

At the time my brain shut off a lot of traumatising experiences whilst sectioned, but once out of hospital my partner provided me with the ideal sanctuary and establishing a great support network with all professionals involved.

I am still struggling with fear and anxiety, but I wonder whether my recovery has prolonged, because of the loss of two important people in my life.

On a positive note I managed to wean off anti-psychotics after one year with the help of a wonderful Psychiatrist and help of my partner...

Each story is unique and so is yours...Treatment, after care and recovery depends not only on level of illness, but also life circumstances. In my case I needed to be with my partner and baby, - loads of TLC and gradual scaffolding of self-management and learning to be a mum.

I have had to slow down and work in stepping stones. After 7/8months I was able to join baby and mum groups once a week...I guess it is very important not to isolate yourself and explore opportunities in order to help you with your recovery.

You are doing exceptionally well.

Take care,

x

Thank you all so much for your replies!! It blows my mind away how strong you all are to have endured such a devastating thing. It truly is unfair, but your strength gives me strength. I just have to remind myself that I have a beautiful daughter and the suffering was worth it if it meant her being brought into the world. I'm trying to be brave and not let this destroy me, I want this to be a great change for the better one day and come out stronger. Unfortunately I have had a severe anxiety disorder since I was 18. I've accepted that anxiety will always be a part of me and that's ok, but depression is something I really never want to experience again.

I cannot imagine taking Seroquel forever as I do not think one needs to keep a cast on a broken leg after its healed so to speak, and it feels like I'm living in a state that is not truly me. I want to experience life as myself and hope to wean off as we approach my daughters first birthday, but another thing I'm curious about is when you were all on your meds, did you feel 100% when you decided to wean off? Or were side effects bothersome, and if so, did the drugs in their own way make you feel kind of gross at the end of the day...like you were well, but just not 100% because of the meds. In my case they take away my great highs and I'm tired a lot and have head pressure. That alone makes me feel down.

DoraDonig profile image
DoraDonig in reply to

Hi Twhtwhts

Congratulations on the birth of your baby girl!!!

I can definitely relate to not feeling100% while on medication... It mellowed me down so much that I was sleeping for 16hours a day, and was just 'floating' through life. I was on meds for 12 months after my PPP episode and was glad to be weaned of it once it happened.

I hope you have a good treatment team that you can confide in with regards to how you're feeling. But please remember that it will get better and you are doing sooooo well with your recovery!!!! Take care of yourself and best of luck xxx

Dorota

Waterfallmama profile image
Waterfallmama

Hi twhtwhts,

Thanks for sharing. I think it's so beautiful that you wrote that the suffering is worth it since it brought your daughter into the world. You are so brave. You brought tears to my eyes. I had pp in August 2016, just a few days after my son was born. He is 19 months old and I am currently weaning off of Risperdal. I will be completely off of it in a month. I still feel slightly depressed, but the worst of it passed at least 6 months ago. I can relate to not feeling like yourself a bit. I don't feel like my old self has returned, but I think that's because of the depression.

Jenny_at_APP profile image
Jenny_at_APPPartner

Hi twhtwhts

I took Seroquel XR following PP in 2012. I took it for 12 months before weaning off over 3 months.

I would say I felt well but not 100% me again until I was off the meds. They kind of dampen everything don’t they, and I don’t think I realised how flat they made me feel until I didn’t feel that way anymore. A colleague told me I was like me but with a spark missing.

I did have side effects though they improved over time - tiredness mainly and I’d get restless legs in the evening which was incredibly annoying.

So to answer your question, for me yes I felt well but not 100%, like you say. I was always impatient to come off the medication, and even before I was discharged from the MBU I wanted to be clear what was a symptom of the illness and what was a medication side effect. But the medication was really important and my psychiatrist was keen that everything was as stable as it could be before I started weaning off, so wanted to see me through going back to work.

I’m glad you’ve found the forum :) It’s a tricky point in recovery I think, starting to process and try to come to terms with everything.

You will feel like you again. As others have said recovery is different for everyone but you’re on that road.

Take care, things will get better.

Jenny x

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