Has anyone else felt like this after postpartum psycosis? It happened 3 years ago..

[Kerri_123]

Hey all.. I had postpartum psycosis in March 2016. After the birth of my 3rd daughter and I've been on medication since, I started off on rispiridone and was on that until October last year, they changed it to aripiprozole cause of too much prolactin in my body. I had a slight relapse while I changed and became suicidal and paranoid again.. I'm now on latuda which I'm getting on very well with its just a few nights ago I became increasingly suspicious and had sever paranoia and insomnia again I stayed awake all night trying to work my life out and making links to things and I think it's because I missed a few tablets as my routine was out of place bieng on holiday and were home now and it's hit me with a bang. I think I'm going to be on medication for life now. I know somethings wrong and the doctors won't tell me, does anyone else still suffer mild effects of pp? Thank you kerri xx

[Lilybeth Volunteer]

Hello Kerri_123

So glad that you reached out to the forum where you will find lots of support and shared experiences. I'm sorry that you experienced PP three years ago and are having a hard time at the moment, especially after a holiday.

As you might have read, I had PP many years ago and similar thoughts which were all very real and frightening at the time. Do you think you should speak to your doctor before restarting the medication you missed on holiday? During my recovery I decided to reduce my medications, without supervision, as I thought I was fine. This was a very bad idea as I relapsed and was very ill.

Perhaps you could book a double appointment with your doctor to let him know how you have been feeling and ask him to refer you for a consultation with a Psychiatrist? It must be unsettling if you think you are not being fully told about your illness. I think you are in the UK as you mentioned in another thread that you were in a mother and baby unit? If so, there is also APP's Second Opinion Service which your doctor can refer you to, free of charge. Prof Ian Jones of APP is an expert in his field and is very helpful and caring He is based at Cardiff University, the link being app-network.org/what-is-pp/... with consultations via Skype if necessary.

Take care .... we are all here to lean on.

[Kerri_123 in reply to Lilybeth]

Hi thank you for getting back to me, I still have a pysciatrist and a support worker, I'm due for a review on this medication on Friday as its been a few months since I started it but I won't be able to go because I'm having surgery on Tuesday for my gallbladder to be removed which im very anxious about.. I just stayed up all night making links to things and bieng delusional it's scary cause we had such a fantastic week away on holiday 😔... I started having abnormal dreams again too that's how it starts then I'm scared to sleep. Yes I'm in the Midlands in UK. Xxx

[Lilybeth Volunteer in reply to Kerri_123]

Hello Kerri_123

Thanks for taking the time to reply. I can understand your anxiety about the operation and hope you have good care around you. I'm sorry you won't be able to go for your review on Friday. Do you think if you contact your support worker she will be able to let your psychiatrist know how you have been feeling? Perhaps when your records are checked before your operation, you will be able to let them know that you should be having a medication review on Friday? Hopefully they will be able to confirm with your psychiatrist and book another review as soon as possible when you are discharged.

Try to focus on the memories of the holiday you had with your family, although I can understand how anxious you must feel. Take good care of yourself. xxx

[Jenny_at_APP Partner]

Hi Kerri_123

Welcome to the forum, I’m sorry you’ve had to go through the awfulness of PP.

Medication is a tricky one, and something to definitely follow medical advice about. I took quetiapine for a year following PP in 2012, before reducing off over 3 months. I suspect you’re right and the missed tablets and disruption to routine are the reason for your recent symptoms. I think if you miss any tablets the advice is usually to restart when you realise, but don’t take any extra or anything - there’s some advice specifically around this medication here that may be helpful, including what to do if you miss a dose - choiceandmedication.org/ncm...

It’s something I’d definitely discuss with your doctor. Try not to worry, my understanding is that coming off medication is something that should be done slowly under supervision so that adjustments can be made if it’s too much too fast. It’s a careful balance and I don’t think having symptoms when you missed some doses means you’ll be on medication for life, your brain was probably just reacting to the sudden drop in medication levels. I’m no expert though so do discuss this with your doctor.

Take care, hopefully you’ll feel much better again once you’re back in routine with your medication.

Best wishes

Jenny x

[Kerri_123 in reply to Jenny_at_APP]

I know it's so hard... I'm so consistant with my medication and never miss a dose when I'm at home I take religiously and I feel great, I feel like my old self on this medication and like I'm my own person again. But I only took it about twice last week which is not like me cause we were so busy all day and then getting myself my husband and all the kids ready to go out I literally forgot to take them 😕.. I don't want to come off my meds at all I feel like my life depends on them. I spent most of yesterday just sobbing and feeling so low and like everyone was against me xxx

[Jenny_at_APP Partner in reply to Kerri_123]

Sorry you’ve been feeling so low. It’s hard when trying to organise everyone I know, I think we tend to put ourselves last on the priority list! I’m sure you’ll be feeling better again soon - could you try and speak to someone over the phone for some reassurance if you’re not able to make your appointment, if you’re not feeling any better in a day or so? I hope your op goes well, look after yourself and take it easy x

[Pikorua Volunteer]

Hello Kerri,

welcome to the forum. Life has been different for me after PPP in 2010. I was on many traditional drugs including Risperidone. We all have had this traumatising illness and life circumstances and influential factors will affect our coping mechanisms according to our template (bio, psycho, cultural etc)

I believe it is good to be able to have a voice about your own well being, but simultaneously to discuss these issues with health professionals, compassionate people and family members and/or friends you are willing to trust.

I used to be in the Midlands and led a very busy career as a lecturer and hyper active life style. I was like a workaholic and enjoyed a social life.

My recovery was slow as I had not been in an MBU. After discharge from the Psychiatric hospital my partner was my full time carer.

I have had after-care via the Community Mental health Team and my care coordinator was my support for 8 yrs...however, I was determined to get help after my care coordinator mentioned in my one to one meeting about her triangular appraisal about my case and my Bipolar like symptoms!

In a way I am grateful to her, as I initiated external support via APP for a second opinion. Lilybeth mentioned already Professor Ian Jones...He has been absolutely fabulous with our (partner and I) 2 consultations,-very thorough and professional.

We are all very different in our "make-up", maybe journalising will help you to explain to professionals how you feel?

Look after yourself.

[Kerri_123 in reply to Pikorua]

Hello lovely lady, I know it's such a shame I was much like you and very out going.. I feel like I'm hust a shadow of the woman I was before all this happened.. I haven't been the same person at all since what happened to me. After my relapse in October my husband took time off work to help me take care of the children and he's still helping now because we never know when I'm gonna have a set back it's so unpredictable, hope your okay? Have you got back to your old self now? I'm finding it really hard and struggling.. I still have paranoia but not quite as severe as when I was in psycosis. I still feel like people will be talking about me or everyone knows something that I don't xxxxxx

[Pikorua Volunteer in reply to Kerri_123]

Dearest Kerri, thank you for your kind thoughts. In my opinion we are continuously evolving and learning from our lived experience, thus you never stay the same...when stuck, one does not let go and then life becomes an emotional turmoil. Scaffolding from what we learning sets us free and we pass on our knowledge to support...be kind to yourself and allow yourself time to heal...health and happiness!!!

x

[Tyshan]

I also went through PPP. It’s probably depression symptoms of bipolar. I also am the same way. I get paranoid and analyze every situation into a bad one and only think of the worst. It’s tiring. Control, safety. Tell yourself your safe and it’s fine, breathe and count to 10.

[Kerri_123 in reply to Tyshan]

Hey, I'm exactly the same.. My support worker hinted at maybe going to a bi polar support group but in the next sentence she said I'm not saying you've got this just how your moods are up and down you might relate to the group. They won't diagnose me bi polar but saying I relate to it? So I'm confused xxxxx

[louise4]

Hi, it's such a complicated recovery after PP. I had it with my first 3.5 years ago untreated and then again 1 year ago with my second but was 6 months before diagnosed and MBU. And have had some bad reactions to anti psychotics so every time I'm changing over there's a big flare up of PP symptoms. If you only took two doses I think the symptoms you're describing are to be expected. I would let people around you know and get extra care for the next week, letting the hospital staff know when you go in, because you're likely to need it while it gets back in your system. It did pass for me and I hope it does you xx

[Kerri_123 in reply to louise4]

Thank you for your reply hun, yes I relapsed in October due to medication change I just couldn't get on with the ones they put me on it was awful I was horrible and suicidal.. Terrible experience xxxxxxx

[Gina139693]

Hi Kerri_123.

After postpartum psychosis and a relapse, I have been told that I will be on medication for life. Originally, my psychiatrist thought I could get off medications because I was doing lots of healthy things. But when I went off all meds, I became suspicious and paranoid. Thus far, I have had two rounds of ECT. Since being healthy is the goal I am accepting the fact that I'll be on medication for the rest of my life.

[Kerri_123]

Hey lovely oh no bless you babe, I'm on my second psychiatrist the first was a perinatal mental health team until aurora hit a certain age then they've passed me over to a psycosis team. My previous one said I'd be on it for long term too but this one seems to think I'll be okay after a year so I think I need a second opinion xxxxxx hope your okay thank you for your message xxxxxx

[Lilybeth Volunteer]

Hi Kerri_123

I hope your surgery goes well tomorrow and you will soon be home .... thinking of you. Take care. xx

[Lilybeth Volunteer]

Hello Kerri_123

I hope you are now recovering at home from your surgery and have been able to have a medication review. Take your time to rest. xx

[Kerri_123 in reply to Lilybeth]

I've had a relapse, it's a bad one but I'm sure I'll get through it xx

[Hazello Volunteer in reply to Kerri_123]

Hi Kerri_123, have just seen this and realised that my reply was totally out of date! So sorry to hear you've relapsed again. It's scary having to go through surgery so not surprised that has knocked you off. I was terrified at the idea of having a c section with my first for that reason.

hope you are able to recover quickly and well. You're in my thoughts and I hope you're getting lots of support.

Hazello x

[Lilybeth Volunteer]

Hello Kerri_123

So sorry to hear you have had a bad relapse after all you have been through. I hope your psychiatrist and support worker are helping you. Try to rest as much as you can and take care. As you say, you will get through it but it's an awful experience ..... thinking of you. xx

[Hazello Volunteer]

Hi Kerri_123,

I had PP about the same time as you and fortunately am doing quite well now, but I do feel that it has changed me forever and I will never be quite the same, and will always need to be on the lookout for getting unwell. For me the symptoms of the psychosis have never recurred but have had a lot of anxiety and a couple of episodes of depression. I'm pregnant again now and I have little peaks of anxiety and insomnia every couple of weeks and it's quite worrying at times but I've managed to stay off medication for the time being.

Can I just say it must have been scary to have PP after your third child as I'm assuming you didn't have it the first 2 times? However can I just say that you're doing a really important hard job, parenting 3 little girls, and that will be bound to wear you down sometimes and make recovery more difficult.

Sometimes, I find it helpful instead of thinking about times when I was at my best and feeling sad that I'm not that way, to try to look at how things have improved since 2016 when I was at my most unwell... I'm sure you've come very far from that time, and even from the time when you relapsed, it sounds like you're in a better place now. I know for me if I ever forgot medication it seemed almost instantaneous that paranoia, insomnia and anxiety appeared from nowhere. I hope that things settle back down now you're in routine again.

Thinking of you and best wishes

Hazello x

[Fatimahg]

Hello, Kerri

Please be very cautious with this advice. However this might be answer. It might be that you were suffering from rebound psychosis, which is an effect from withdrawal from the drug. Here is a bit of research

onlinelibrary.wiley.com/doi...

If access is locked - I can try to find a way to send the research paper through the moderators perhaps. The findings of this study are that "Discontinuation of clozapine and possibly other antipsychotic drugs may provoke a rapid onset

psychotic episode that may be distinct from the underlying illness in some patients". This is very important because there may be some patients who are not longer suffering from any illness and drug withdrawal itself is causing ongoing symptoms.

I have come across a case, of a male patient, misdiagnosed with schizophrenia who had these withdrawal effects. We did not taper doses in the end and went "cold turkey" under serious supervision. He recovered well. It might be worth reviewing for yourself with your psychiatrist.

We didn't taper doses because it just prolongs withdrawal - even reducing dose a little causes a psychotic state to reoccur. It is not like withdrawal from other drugs where tapering doses can work well and symptoms during withdrawal are minimal.

Just to state that I am a science based neuropharmacologist - and not a psychiatrist. My wife is suffering from PP. It is a very sad condition, but usually, it gets better. I really feel for you.

All the very best! CG