I was wondering how long you all stayed on antipsychotics after your first episode.
Also was wondering how long you were well before completely stopping medication, and if you received another diagnosis besides PP.
I have found the recommended duration quite long and struggled to follow the psychiatrist's orders ( I had to quit on my own). I am also not sure if the guidelines are evidence based or just the general opinion of current psychiatry (where the assume the risk of relapse is worse than the side effects of the medication, thus the longer you are on them the safer).
Thank you for sharing your stories.
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I would dearly love to know what the guidelines for being kept on antipsychotic medications are, as you have understood them, as well as what providers have told you.
I am in the USA, and was kept on them for 20 years. I was never given any kind of guideline. After my psychosis did not resolve within a couple months, I was told that it was permanent and that I would have to be on meds for the rest of my life. The psychologist I was seeing said that my brain was permanently changed and would never change back. Until this past year, every provider I ever saw supported that. Yet I have never once seen a single paper indicating that postpartum psychosis can become a permanent condition. I’ve searched.
I have been stable for the last seven years. After I got some new providers about a year ago, they agreed to work with me to discontinue the antipsychotic meds. I have been off for six months and have no symptoms. I still take a mood stabilizer and an antidepressant because I do have bipolar 2 disorder and always have had that.
I too want to know why women are being kept on these meds so long. It really affected my life and my health. I look forward to your reply!
Well, the current guidelines seem to be a minimum of 6 months but usually it ends up being 1 or 2 years. I don't understand why such a transient disorder with acute psychosis needs to be treated that long. I was on antipsychotics for almost three months when I felt very stable and the only thing keepeing me "not back to normal" was the medication, so I stopped them. I have been med free 5 months and feel completely myself. I have read so many stories about women still struggling even a year after the episode, that I wonder if the current guidelines are failing us.I don't have any other mental health diagnosis besides PP, so a short treatment to me makes absolute perfect sense.
I can only wonder what my life could’ve been like if I hadn’t had to take those meds for so long. But, at this point I just have to move forward, since I can’t change the past. I’m glad you were able to be proactive and it turned out well for you, truly. You are fortunate.
As of last October I began seriously looking into what research I could obtain about the treatment of PP, with the help of my father who is a retired clinical psychologist and has access to paid mental health research subscriptions. A 2016 article he provided me stated that as of that time, there had been less than 30 studies done worldwide on the treatment of PP. That’s pretty shocking. With the holidays and a surgery looming next week, I haven’t had time to spend looking into the more recent research, but I plan to do so and become more involved. I became ill in 2002, and my lived experience was that no one really knew what they were looking at or how to treat it at that time. I think you’re exactly right that the guidelines are perhaps not well established and not well researched. Even if a bunch of research has been done since 2016, it has only been seven years and there hasn’t been time to do a lot. PP is rare enough that it’s not like the world is bursting at the seams with study subjects.
Thank you for your reply and best wishes for the new year!
I’d love to hear if you find anything significant. Wish I had access to your professor Ian Jones who has done so much work on the subject but since I’m not a UK resident I’m ineligible for the research studies currently happening there. I’m having surgery next week but as I recover I hope to have some time to look some more here in the US. I feel like even just from reading this feed, women here are not typical of the research I’ve seen, which is that PP happens within a couple weeks of birth and resolves quickly. I can’t help but wonder if there is some disconnect, if cases aren’t being followed on a long term basis, or if the moms on here just aren’t typical. And is anyone even looking at this?! I’m not a researcher and have no credibility but as a sufferer I’d like to know more. We deserve to know. And PP has been recognized as a psychiatric disorder for hundreds of years, literally, so it’s time someone started to understand it better.
Im sorry to learn you’ve experienced PP - it’s such a tough gig. I experienced it with my first (and only) pregnancy in 2020 and was on antipsychotics for two months.
Initially I was told id need to be on antipsychotic meds for a minimum of 6 months, but likely a year or more. I ended up changing psychiatrists to one who, by chance, had lived experience of a son who was bipolar who had difficult to treat psychotic episodes. I think that’s what gave him a different view than every other doctor I’d seen or been under, and after a couple of long consultations with me, he recommended stopping all antipsychotics and starting a high dose of antidepressants. So I changed, very slowly, from 20mg of olanzapine (I understand a very high dose, and the highest licenced dose) to 200mg of sertraline (which I also understand to also be a very high dose, and the highest licensed dose). I’d initially only been taking Olanzapine, Zopoclone and Lorazepam with no anti depressant so quite a change to an antidepressant only. That was the true start of my recovery.
So while no doubt I had experienced a very bad psychotic episode and antipsychotics were absolutely needed, he believed my psychosis was the result of extreme trauma through my late pregnancy, birth and early postpartum days with unexpectedly losing my mother, having major health complications with my daughter (both of us), amoungest other things, all in covid where I hadn’t been allowed any support. His hypothesis was that it led to sudden onset and severe depression that went untreated (I’d seen my GP and OB multiple times concerned about my mental health and they’d both put it down to normal pregnancy mood and stress). His theory was that it was depression that needed urgently treating, and when I was ready the trauma should be worked through and processed. He recommended EMDR to do this. I followed this new plan strictly and it worked.
So while our stories may not be comparable, thought you might be interested in hearing how my diagnosis changed and how medication supported my recovery.
That's a fascinating story. I'm so glad that you were treated appropriately and you had individualised care, which is so rare. I am also very happy he recommended EMDR, which is very well supported by evidence unlike many other psychological therapies.
I had also health problems with my baby which I believed led to the psychosis, but my healthcare team was adamant that had nothing to do with it.
The fact you were on antipsychotics for such a short period to me demonstrates that a considerably short treatment is efficacious.
I recently recieved my bipolar 1 diagnosis of years of being mentally unwell, for years before my postpartum psychosis episode as well. Me and my psychiatrist trailed only being on an antipsychotic for one week of the month during my pmdd week and the rest just on sertraline. Well it didn’t work. It’s been an awful month and I’ve not been well. I went hypomanic, really depressed, ocd anxiety and some psychosis symptoms. Not uncommon for me, but was intense not being on the right medication. I will be on meds for the rest of my life no doubt. I may trail being on less antipsychotic when life is a bit calmer, but it wasn’t the right time now.
I’ve read lots of women coming off of medication and being fine, so don’t be discouraged. This was my experience. And I’ve had mental health issues my whole life.
I hope you're well and thank you for posting I'm Jenny, one of the peer support coordinators at APP.
I had PP back in 2012 after the birth of my first son. I took antipsychotic medication for 12 months before weaning off over 3 months, so 15 in total. My understanding then was that 12 months was about standard and longer if needed. Of course everyone's circumstances are different and I imagine it's quite an individual thing for all sorts of reasons. I know of women who have come off medication sooner than recommended and been fine, but also women where coming off medication earlier than recommended led to a relapse, so I would say to always discuss the options and risks with a medical professional and ensure any medication changes are done under supervision.
I was fortunate in not experiencing a depression following the PP, I've not had any other diagnosis and had no history of mental illness before having a baby. I was quite impatient about coming off the medication sooner than recommended as I felt ok, but the psychiatrist wanted to be sure everything in my life was stable before we changed anything (so to wait until I was settled back at work after maternity leave etc.) and the side effects were manageable so I waited.
Thanks for your response. Do you happen to remember approximately how long you felt ok before stopping the medication? Is the risk of relapse really that high once being stable for months? Psychiatrists seem to think so, otherwise why would women need to be on antipsychotics for a year or two? If you have any information on relapse rates that would be helpful. I'm not too worried about it, but if medication is recommended for a year, that would mean I can still relapse even if I've been stable for 8 months or longer (?!).
I’d be really guessing as to how long I felt ok before stopping meds, maybe 3 or 4 months?
I’m not clinical and no expert but I guess as with any guidelines, they are guidelines and where possible health professionals should work with the individual and take their wishes and preferences into account, while weighing up and explaining the potential risks. I would hope if someone was very stable over a period of time and adamant in wishing to reduce their medication, that this could be done in a closely monitored way so that if there were any concerns they would be dealt with quickly and medication adjusted again. In my case, the side effects felt manageable and I knew the plan was to come off the meds after the 12 months if everything was stable so I felt ok with that. If I had horrendous side effects I may have felt very differently, and then it’s weighing up the side effects against a potential risk of relapse – even if the likelihood of relapse is low, the potential impact is high as it would set back and further prolong recovery so that needs to be taken in account… I’d have thought how stable someone is over a length of time would come into how likely a relapse would be but the risk remains high due to the impact if it happened, if that makes sense (but again, I’m no expert and these are just my thoughts!).
I’ll see if we have any information about relapse rates in connection with coming off medication – I guess within those rates again you’d have all sorts of different situations at play, including those who stop taking medication abruptly, those where medication is stopped without any medical supervision, and where there are still symptoms being experienced, so it probably wouldn’t offer a full picture.
I don’t know if my thoughts are helpful, I’d just encourage people to always discuss things with their doctors, weigh up the risks and make informed choices 😊
I’ll let you know if I find any further information that might be of interest.
Thank you Jenny. Unfortunately my psychiatrist would not listen to me and would not consider me weaning off the medication before the recommended 6 months of being stable, so I had to do this on my own.
I was on antipsychotics for 8 months. No previous mental health issues, no issues other than the one PP. came off them 4 months ago and have been absolutely fine. I am convinced I didn’t need them as long as 8 months and had to fight every meeting to get them reduced. Everyone is different but you know your own body.
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I'm Jenny, one of the peer support coordinators at APP.
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