Risk of recurrence

[mfc83]

Dear all, I just found out about the risk of recurrence of another episode and it terrifies me. How do you deal knowing that you might get an episode again later in life?

For more information read about the risk here: app-network.org/research/cl...

[Csanderson Volunteer]

Hello,

Im always very anxious about relapsing but I have put a plan in place on who to talk to and what helps me when I struggle to ground myself.

I think the underlying anxiety about it will always be in the back of my mind but I know with the right support I can get through it.

You might find it helpful to come up with some sort of plan for yourself. Sort of like a comfort blanket

Hope you are okay!

[Lilybeth Volunteer]

Hello mfc83

Welcome to the forum where you will find lots of support. Can I ask if you have recently suffered an episode of PP? It is an awful experience as for many of us it came out of the blue, so it’s understandable that the risk of recurrence terrifies you.

For some mums here they did not suffer a recurrence of PP in subsequent pregnancies. I had PP twice years ago, six years apart, but at the time there was not so much awareness of mental health. There are resources here and I wonder if you have seen the PP Insider Guide “Planning Pregnancy : A guide for women at high risk of PP” at app-network.org/what-is-pp/... with some good things to consider and put in place to reduce the risk of recurrence.

I think pre-conception counselling is available and talking to health professionals throughout another pregnancy is reassuring so that you are regularly monitored.

For women in the UK it is possible to be referred to the Second Opinion Psychiatry Service at Cardiff University at app-network.org/what-is-pp/... where you can receive advice from professionals regarding future pregnancies. There is no charge for this service either to yourself or the referring NHS Trust.

Hopefully you will not suffer a recurrence but as suggested here earlier it is a good idea to have a plan to follow. I did have PP a second time but with good care I did eventually recover and have two treasured sons.

Take care and try not to worry.

[Ellie_at_APP Partner]

Hi mfc83

I think you voice something all of us definitely feel, the fear of becoming unwell again. I had pp in 2011 after the birth of my son. I haven’t become unwell since but it’s always something I’m aware of that might happen.

It is difficult because as the research says there isn’t enough information so far to identify why some women relapse and why some don’t .

I think each of us have probably found different ways to manage those feelings. It feels so scary because the first episode for me seemed to happen so quickly and come out of nowhere.

I have tried to see it positively, as a call to look after myself and take proactive steps if I’m not feeling great. For me making sure I have good nights sleep (I know, easier said than done sometimes) , particularly making sure this is the case when going through stressful situations (eg work stress, moving house).

Finding friends / a support network of people that lift me, with similar values, who I feel deeply connected to (we moved house halfway across the country mainly for this reason)

And yes doing things I know help give me life, and make me feel good, and ground me as someone else said. for me I like meditating, listening to podcasts, seeing good friends, reading. For you it could be exercise, wild swimming ! , anything! The most important thing is to prioritise our selves I think, something a lot of us struggle to do I think!

I hope some of my thoughts are helpful. Basically I’ve tried to not let the fear of relapse paralyse me but more see it as a call to look after myself.

Take care, you’re not alone, what you feel is so normal and natural after having pp

Ellie x

[Maria_at_APP Moderator]

Hi mfc83,

I empathise with you, specially as my episodes came out of the blue and very suddenly after the birth of my girl 2 years ago.

As the replies above have mentioned having a plan and with a good support network in place, the risk of getting unwell again becomes manageable. Also knowing your triggers and recognizing signs of deterioration can make you feel more in control. Like Ellie says if I stop sleeping I try to take action very early as I know that is an important one for me.

An increased self awareness is something I gained after pp, and I communicate my mood to those closest to me when I feel concerned.

Perhaps counselling can be an avenue to explore to help draw a care plan in case your health may deteriorate in the future?

Take care, you are not alone in this feeling

[mfc83]

Thank you all for your replies, I feel that you can really understand me and have given me valuable advice. Also the feeling that I am not alone suffering this...

Lilybeth yes I have suffered from PP in Juni this year. I was 6 weeks at the hospital and was sent home with 5mg olanzapine. Now I am currently taking olanzapine 2.5mg and as the medication goes down I start to feel slowly myself again and this means I start to worry and be anxious. I just had PP out of the blue and spent some days hallucinating continuously and was brought into the hospital against my own will, so that the idea of loosing control again terrifies me.

[Lilybeth Volunteer]

Hello mfc83

You are definitely not alone and we all understand. I’m sorry that I replied as though you might be thinking of another baby and can now see why a recurrence terrifies you.

I’m so sorry that you suffered PP only a few moths ago. It is a very frightening experience, hallucinating and having intrusive thoughts. Like you, I was sectioned, taken into hospital and placed under general psychiatric care. There were no facilities for my sons to be with me as my episodes were long ago. Were you able to be with your baby?

Are you in the UK? If so I wonder if you can speak to the perinatal team for reassurance and support? If you are on a lower dose of Olanzapine and feel worried and anxious, do you think you should ask your doctor for a review?

I’m really pleased you reached out to the forum. I think having PP out of the blue is a lot to come to terms with so please rest as much as you can. I wonder if you have seen the PP Insider Guide “Recovery after Postpartum Psychosis “ at app-network.org/what-is-pp/... which might be helpful.

Be kind to yourself and try to sleep when your baby sleeps. I hope you have support around you. Take care, we are all here for each other.

[Maria_at_APP Moderator]

Hi mfc83,

I am sorry to hear you had pp in June this year and that you were also sectioned. I was sectioned in 2018 when I had my episode of pp. It is a terrifying experience, my episodes also involved hallucinations, mania and terrible delusions. In the first months of my recovery I was very anxious about becoming so unwell again, but slowly my confidence started to build up again. It takes time though and its not easy, but it is very achievable, you can fully recover from this illness, the odds are in your favour.

Like Lilybeth says perhaps a review of the medication can be a good idea if you are seeing a spike in your anxiety after a drop on the dose. My psychiatrist and I agreed on taking my time to wean of olanzapine and was still on 5mg 8 months after my episodes, I came off it in a year, and that felt right for me.

Take good care and write here whenever you feel like, we are here to listen

[guinea1]

Hi

I had PPP 25 yrs ago the treatment was very different back in the day... seperated in a psychiatric hospital from baby... lack of understanding to a new mums needs. Was there a month getting worse, the doctors couldn't see this, though my husband could.... he got me on a weekend home visit and refused to take me back, after a month at home with no real support from medical professionals things got bad and went to a private clinic paid by NHS...this time with baby, where the treatment was totally different and they helped me to bond and gradually gain confidence with my baby... everything went well and two was home... I put all the bad things about the horrific experiences at the psychiatric hospital behind me or so I thought, went on to have a second child absolutely well.

What I didn't realise until these later years all the trauma of the birth and psychiatric hospital treatment..I had just locked away, unable to process it it as it was far too painful. About 5 yrs ago I began to have tummy troubles and started having to sed doctors and hospital treatment, this was all fine until a consultant got stressy with me telling me there was nothing wrong with me and when asked why I was in all the pain... replied I don't know and I left in tears.. gradually things have fell apart and come unwound I was so scared to talk to drs as feared the PPP was coming back and this time would have no baby to protect me from the psychiatric hospitals so was really suffering, had plans to disappear.... anyway my gp and I did have a good relationship and worked with me and one appointment I just let everything out how afraid I was of PPP coming back as had been told it would by a social worker when i had just come out of the clinic and had been haunting me over the last years .

I have had help, counselling ang lots of support from my gp he has been there for me all the way.. the treatment I received in the hospital has never really been processed properly and I think locked in for so long... has led to me being diagnosed with PTSD I am still recovering from this and at present waiting for therapy.

I know things are different now for I hope the majority or mums anyway, I feel if you or anyone is worried about things coming back in later life, is maybe speak to a trusted gp about concerns you have, especially if things are still painful of the time of they had this aweful illness and memories very painful, just don't let things build up... the problem I have is trust and fear of the ones who can help me... but things are getting a little better and am in secondary care so hopefully this time things will work and I will be able to move on.. I do feel more is need to explain to women about later life and support if there is history of PPP even if it was out of the blue and no mental health history before or after the event.... maybe to be able to have some kind of well women appointment around the time of menopause to keep an eye on things.. I is good to hear that they will teach about menopause in school now.. as can be a pretty hard time for some women.

[Strawberry55]

I was exactly the same. I personally made a care plan of my wishes should it occur again, and shared it with those close to me who supported me. We think we know the signs now and are all aware so would know what to do and where to go.

There are things I remember from my PP, the main one being I was nearly always aware of what was going on yet others assumed I wasn't and made descions for me without talking to me. I didn't want that to ever happen again and made sure I put my views accross and in writing for IF this awful illness where to ever strike again. Maybe this is something you can do?

Time is a great thing, it may not heal fully, but the painful memories reduce. Try not to think of the what if, be prepared but don't let the what if hold you back.

Hope this helps a little. x