Action on Postpartum Psychosis

Weaning off meds

Hi everyone it has been a long and difficult journey since my sister was diagnosed with postpartum psychosis on Jan 2017. After different meds, 3 admissions to the psychiatric unit and about 13 sessions of ECT...my sister was finally stable and acting much like herself again since July 2017. At that time she was on 15mg of Zyprexa and 900mg of Lithium...currently she is on 1.25mg of Zyprexa and 900mg of the Lithium. She continues to do well and is very stable..thank God.. For those of you who have been able to successfully wean of your meds from this point forward what is your advice...did you guys wean completely from your antipsychotic before weaning Lithium, how long after being off the antipsychotic did the lithium weaning began? How slowly did u wean off the Lithium?

We will continue weaning off her meds with her psychiatrist advice, just want to get advice from women who have gone through this.

Her phychiatrist tells us that she still has a 50% chance of being diagnosed with bipolar depression if she relapses after weaning meds...and we want to do everything possible in our hands so that she can be stable and be the same person as before without the meds...

Thank you so much for ur help

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Hello Luvsis

Welcome to the forum. I'm so sorry to hear about your sister's difficult journey after suffering PP. I had PP many years ago and ECT was more effective than medication at the time although I had both. It's a very difficult time for family as the joy of a new baby is tarnished with this awful traumatic illness that for many happened out of the blue.

I delayed my reply as I haven't any experience of the medication you mention. There is a choice and medication website which might be helpful but unfortunately I can't find the link. Hopefully another mum here will be able to help with that.

I also wonder if you have seen the APP Insider Guides "Recovery after Postpartum Psychosis" and "Postpartum Psychosis : A Guide for Partners" at app-network.org/what-is-pp/... although I appreciate your sister is a year into recovery. It's good to hear that she is well and stable which must be such a relief to your family.

There will be other mums here to share their more recent experiences. In the meantime take good care of yourself and I hope your sister continues to make slow and steady progress.

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Hi Luvsis

It sounds like you all went through a really tough time, I’m glad things are stable now and your sister is now in the process of weaning off her meds.

I didn’t take lithium so can’t offer any experience on this sorry, but I’m sure others will. I was lucky in only having one drug to wean off and it went well.

The website lilybeth refers to is choiceandmedication.org/ncmh/

Wishing you all the very best. It’s a daunting process but hopefully all will go well.

Very best wishes,

Jenny

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Hi Luvsis ,

I am so sorry to hear about your sister and the hard times you have all faced .

I had PP over Christmas 2016 and was in hospital for 9 days . They put me on Olanzapine and the first night they gave me something really strong to make me sleep and calm down I stayed on the olanzapine until March at that time i felt that the tablets weren’t helping in terms of the fact I would sleep all day and all night and I felt that this was not helping me feel any better and on the advice of the drs I was told just to stop taking it which I did .

It was very hard to come off these and the anxiety was horrific as was the sickness and feeling like crap but in time and with a huge amount of support from my dr I did not take them or anything else , I chose to pay for private counselling and this helped me to feel better .

It has been a very long and hard road to feel like I do today and I still don’t feel 110% but when I compare to how I was I am happy and I feel so so very lucky .

Your sister is very lucky to have your support and i would say the thing that helped me was seeing my dr once a week as I knew if I did start to feel poorly again my appointment was close the dr then would make the appointments further away in time and do like 9 days not 7 and so on . I really hope she feels better soon and I hope your doing okay too .

Best Wishes xx

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Hi Luvsis & welcome to the forum,

It sounds like you’ve been a great support to your sister and I hope the APP Guides and Choice & Medication website links have been helpful to you.

I had pp in 2009 and took both Olanzapine and Lithium as well as a course of ECT as part of my treatment. It’s a long and hard road at times but I got there and I hope this site has also reassured you that recovery is possible for your sister too. Perhaps your sister will also find the Guides and Forum when she is feeling that she would like to? Family and friends support in recovery is so important though.

In terms of medication reductions, my experience was that I was on the Olanzapine for just over a year and reductions started after about 3 months for the daytime dose and then the night time until I was just taking it at night and then stopped that too. I did find it a really good drug in terms of sleep (as I struggled with this a lot when very unwell) and it was the anti-psychotic which worked for me when others hadn’t, but it also made me quite “foggy” and tired too so it was good to reduce and stop in terms of day to day function.

Lithium for me was added to my treatment when I should have been making more improvements but was still very up and down, so levelled me out as it were. This was whilst I was still in hospital so the levels were very carefully monitored and this continued when I got home. I took lithium for 3 years in total and once the “therapeutic” dose was found which suited me, this was a steady thing for well over a year, possibly closer to two. When reductions did happen, it was very gradual (like the Olanzapine) and I was monitored by both the mental health team and also my GP as regular blood tests are required for lithium (also checking thyroid, liver and kidneys I think, as well as the levels so it remained within the therapeutic range).

At the time I found it really intrusive to my life if I’m honest, especially the last year or more, when I was feeling that I should be putting the pp experience behind me and getting on with life. But in hindsight I know it helped my recovery and me stay well and whilst I didn’t appreciate it at the time, it was very important.

When I stopped meds I was monitored for a further 3 or so months by the mh team and then discharged. I don’t have any other mh diagnosis and hadn’t been unwell before pp and have remained well since (although very aware of my mh in a way I had not known before). I also had a second child in 2013 and stayed well with no recurrence of the pp.

Does your sister have a supportive mh team around her? I think my experience and timescales are also due to being under an Early Intervention in Psychosis Team when home as there is no Perinatal team where I live. Are you in the UK or overseas? I hope the professional support is proving helpful to your sister.

Apologies for the long post but hopefully this will give you some info which will be helpful. Take care and please do ask any further questions we can help with. All the best, xx

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13 sessions of ECT wow...How old is your sister give me some more background I am just getting my life together I am weaning this time quite well!

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Hi pumpkins my sister is 36...this is her second baby but her first was 16 yrs ago with no postpartum problems...

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Hi everyone thanks for all your replies and info...I did come across the APP insider guides awhile back when my sister was hospitalized and they did help in understanding this terrible condition that came out of the blue for my sister. We are overseas and when my sister first got sick the professional support was not as helpful to my sister. How I wished my sister could have had the opportunity to be in a mother baby unit, I believe I’ve only heard there are 2 in the U.S. (pls correct me if I’m wrong). But with persistence we did find a psychiatrist who is very knowledgeable with postpartum mental health 2hrs away from our home, my sister was hospitalized in a psychiatric unit under the care of this psychiatrist and from there on we were on a road of recovery, although it did not seem or feel like it at that time.

We are seeing her psychiatrist now once a month and decreasing her meds very slowly. I believe she too finds it very intrusive to her life to continue to take medications. But also would do anything in her hands to try to prevent a relapse. Will keep you guys posted on my sister’s recovery.

May I ask for prayers for a full recovery for my sister

Thank u

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Hello Luvsis

Good to hear your update. I'm glad your sister is seeing a Psychiatrist once a month now and decreasing her medication under supervision. Like your sister I found taking medication very intrusive so decided to reduce my intake myself, which was a very bad idea and I went downhill very quickly. I told my Psychiatrist I had learned my lesson and never did that again!

As you are in the US I wonder if you could find support with Postpartum International at postpartum.net where there is a section on Postpartum Psychosis Help?

As awful as it is, PP is a temporary mental illness from which your sister will fully recover in her own time. Remember to take care of yourself too as this must be a stressful time seeing your sister unwell but stable.

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