Hi all! Hopefully everyone is doing reasonably well. I am now 11 months postpartum and doing very well.
my psychosis happened 5 days postpartum. I was in hospital for 2 weeks and recovered fully after about 1 month (which I know is very fortunate). I took olanzapine for 11 months and am now off of it but I remain on an antidepressant and a mood stabilizer (lamotrigine).
So like many of you probably, I am researching articles on long term prognosis for this disease. The data seem to be a little all over the place which is concerning. I’ve seen statistics that say as high as 44% of women will have another episode unrelated to childbirth in their lifetime. Then other articles say that 37% will have an affective episode (meaning a manic or depressive or mixed mood episode) while 8% will have psychosis. Then another study says that 50-80% (!) will go on to have a bipolar diagnosis but (20-50% will have full remission without any further episodes). (These are pretty wide ranges) My mind is sort of spinning with all these statistics. I have made an appointment with my psychiatrist to discuss all of this of course but I wanted some encouragement here. For those of you who it happened to and it has been some time - how have you coped? Did you go on to have a bipolar diagnosis? How soon did your initial PP episode occur? Within 2 weeks or later? Did you have any more episodes outside the postpartum period? My husband and I want to have more children (1 more child). And I have read that prophylaxis with antipsychotics is highly effective to prevent relapse post partum. I am of course still nervous but confident in my doctors that they know what they are doing. How do you all manage your anxieties regarding prevention of lifetime relapse? And if the statistics really are that high - why don’t doctors just keep us on meds forever? From first hand accounts and other literature I’ve read - this is a temporary illness that resolves after postpartum. (So then why such harsh data?)
Any information or encouragement is very appreciated. Thank you all.
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EquineBeauty
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Welcome to the forum and thank you for posting. I'm glad to read you have been doing well since your episode of PP, and I'm sorry this was your start to motherhood too.
I had PP back in 2012 after the birth of my first son. So far, this has been my one and only episode of mental ill health. I had a second son in 2016 and fortunately stayed well.
I am very aware that there is a risk of future episodes of ill health, including around the time of perimenopause/menopause, and I think it's helpful to be aware of this and know what to look out for in terms of signs and symptoms. You've probably already looked at the information on APP's website in terms of what we know from the research, on the FAQs page it says the following under the question 'Am I likely to have an episode of psychiatric illness at other times?':
The long-term outlook after an episode of PP tends to be very good and women recover fully. However, some women who have had PP will have further episodes of illness unrelated to childbirth.
Just over half of women with postpartum psychosis will experience an episode of depression, bipolar disorder or related illness at some point in their lifetime. (This estimate includes women with and without experience of mental illness before their PP episode, and so the risk may be lower for women whose PP episode was ‘out of the blue’.)
It has been suggested that some women who experience PP may be vulnerable to relapse at times of major hormonal fluctuation, such as during the perimenopause (the time from the onset of menopausal symptoms, such as hot flushes and irregular periods, until the menopause itself).
A case series review of post-menopausal women with a history of PP found that 30% reported an episode of illness (including depression or mania/psychosis) during the perimenopause. Strikingly, most women who relapsed during the perimenopause had been well during the years in between childbirth and the menopause. Further studies are needed to explore this potential risk period more fully and identify which women might be at risk of perimenopausal relapse. Women, their partners and families should be vigilant for signs of relapse during the perimenopause and seek help from their GP or mental health team should symptoms develop. For more information about PP and the menopause, you may wish to visit this page (app-network.org/postpartum-.... You can also find information about relapse planning on page 14 of our guide on recovery after PP (app-network.org/postpartum-....
My episode of PP happened around 3 weeks after birth. I recovered well and over time my anxieties about relapse have certainly lessened, but I think it's good to be aware that we might perhaps be more vulnerable at times of high stress for example, and know what to look out for and what we'd do should it ever happen.
I hope this is helpful and that it will be helpful to read about others' experiences too. I'm sure we all go through the same worries but have hope - it is definitely possible to fully recover from PP. We don't know what the future holds but support is out there and you're not alone.
Thank you so much Jenny for your thorough and thoughtful response. I am so glad to hear that your episode has not returned. There is hope for the rest of us
My PP did happen out of the blue (although I did have depression during my pregnancy and I was unmedicated for it). My doctors do not believe I have bipolar disorder. But I understand only time will tell. (I did have moderate depression one time in my life, after having Covid… which may have been the cause, I don’t fully know. But I feel like I can deal with depression. I know how to keep it at bay now. But psychosis was a beast of its own. It was so… uncontrollable, so scary.
I am glad to hear you are well. And happy to hear that those statistics are lumped together so perhaps women who had postpartum psychosis “out of the blue” are in a lesser category. Although I wish it didn’t happen to anyone, regardless of their prior diagnosis or lack thereof.
I will read those links that you had sent. And it’s vital to be aware especially during perimenopause; perhaps I can discuss with my care team about possibly going on antipsychotics as a preventative. It’s good to be aware. I am just trying to stay hopeful about my future and not dwell on fear of relapse, although it will probably be there for awhile.
It’s also great to hear that you had another child and remained well! We plan to do that next year and I will take antipsychotic medication prophylactically.
Thank you again, and have a wonderful weekend with your family!
First, I'm just curious if you are a horse lover? If you are, I am too. I just started riding again after many years out of the saddle.
I'm a 22 year survivor of PP, so mine is a very long story, which I won't go into in depth. But pertinent to your questions, I was a little unusual in that I didn’t start to experience psychosis for several months after the birth and it came on gradually. Because I lived in a rural area in the USA, I did not have ready access to psychiatric care and I lived with this for ten months before I became completely psychotic and nonfunctional and was hospitalized. At that point, the doctors did not know what was wrong with me, because the baby was ten months old and so they assumed it could not be postpartum psychosis. I was actually misdiagnosed as having schizoaffective disorder, bipolar type, and I was kept on antipsychotic medications for 20 years as a result of that diagnosis. I’m now in my late 50’s and postmenopausal.
What I'd say to you, is that I personally would recommend being cautious about rushing in to take prophylactic antipsychotics, especially on a permanent basis. The side effects of the antipsychotics they put me on greatly affected the quality of my life over time, and have had permanent, and what I consider very negative effects on my general health. Although they affect everyone differently, the biggest result for me is that I gained a lot of weight, because they tend to make you hungry and not feel full when you eat. (I saw on another post you have experienced some of this too.) It’s a very common side effect with these drugs. As a result of the weight I gained, I now have severe arthritis in my knees and feet, as well as some in my lower back. I've lost about 70% of the weight since getting off the drugs, but my joints are destroyed to the point that only surgery will fix them now. I live now with constant joint pain, and have trouble walking and standing for long periods. I was very nearly diabetic, had high blood pressure and high cholesterol. Those went away when I lost weight again, although I still have arterial plaques that had built up, leading to concerns for my heart health. I also have a permanent body tremor. I believe the extra weight also led to hormonal changes which MAY have contributed to me getting breast cancer. I am NOT saying that the drugs cause breast cancer; they have not been shown to do that. But being overweight and having higher blood sugar can be risk factors for breast cancer, and I also have a family history. So I do believe that the medication may have led to conditions in my body that allowed cancer to take hold. Absolutely talk to your doctor, they are the professionals, and your own situation is different. These are only my opinions, my lived experience. Knowing what I know now, I really regret having taken those drugs for so long and suspect that my health has been permanently compromised because of them. Also, if they did that to me, I’d feel very uncomfortable about taking them while pregnant and exposing a developing child. I did not have any kind of relapse when I became menopausal. In fact I was told that things might get better when I went through menopause and that turned out to be true for me. It also helped me to gain the courage to try to stop the meds altogether, because it felt less risky.
After I went off the medications and realized that I do not have a permanent psychotic disorder, I began to do a lot more research on postpartum psychosis. There isn't a great deal of research out there, and what is out there can be confusing and contradictory. Compared to postpartum depression, postpartum psychosis has a far smaller body of research, partly due to the emergent nature of it. I have a relative who is a retired psychologist, and he showed me some of the available literature on it. Prior to the last 15 years or so (I forget the exact year quoted in this article), there were less than 30 studies in the world available on the treatment of PP. In the world! Here in the USA we still have many, many providers who have never treated a woman with PP and don't recognize it, and this is why I was misdiagnosed. It's not included in the DSM-5TR as a psychiatric disorder, so no one can even easily define it. If you're in the UK, you're a bit better off. But it's not you; there aren't very many hard and fast answers available. If you do decide to have another child and have a research study option available to you, I'd encourage you to do it, because the rest of the world really could use it.
Again, I say that was my experience and my opinions; you must choose for yourself. Your doctor will have recommendations. Just remember, ultimately you are the one who will live with the outcomes, not the doctor. I don’t know of a source anywhere that says a great deal of weight gain is healthy for the human body, so just be cautious and understand what those outcomes might be, so you can make a plan that fits you best.
Hi Survivedwithcolor!! I love the name you chose. After everything you have experienced from what you’ve shared - you have definitely survived with “color” and are more vibrant for it! Many challenges overcome
I am indeed a horse lover. I grew up in an equestrian community and rode all the neighborhood horses. Rode throughout college too and all throughout my 20’s. I am 40 now and we live in the city (in Florida) so no riding opportunities, plus I’m taking care of a 1 year old and about to return to work. But I do hope to get back in the saddle one day and teach my daughter to ride! Horses are so therapeutic. Good on you for starting again.
Thank you so much for your detailed response. I’m so sorry to hear that you have dealt with many health issues outside of just the psychosis and that it was not recognized for so long, that must have been hell.
My symptoms started on the 2nd day in the delivery ward. I had major depressive symptoms, a panic attack at the thought of being discharged, and incessant insomnia. (All telling signs of impending psychosis, especially the complete insomnia). They even called in a psych evaluation - but she dismissed me as “just having depression” and they discharged me on the third day with a low dose antidepressant and anti-allergy medication for sleep. 2 days later I was full blown psychotic and taken in the back of a police car to the psychiatric ward. (Because I had suicidal and homicidal ideation)
The experience was SO scary, so so terrifying - I feel despair at the thought of possibly experiencing something like that again, ever.
Hence me thinking that I’m willing to be on antipsychotics long-term just to prevent it. But perhaps you’re right. May be I’m jumping the gun here. In a matter of 9 months I gained 50 lbs. My feet really hurt walking already. And I had gestational diabetes too so who knows what the weight is doing to my blood sugar. (I should probably test it)
We are thinking of having another child by next year; my psychiatrists and OBGYN all told me that a low dose of olanzapine (2.5 mg) after the 35th week of pregnancy is safe. And then increasing to 5mg post delivery. I’m not thrilled at the idea of having to take it again for a year postpartum but they said it’s very effective in preventing relapse. And a year is indeed “temporary.” They will keep me on Zoloft as well as Lamotrigine for awhile. (2-3 years?)
It’s great to hear that you are now off all antipsychotics and nothing happened to you in menopause. Once you realized that you don’t have a lifelong psychotic disorder I am sure you breathed a huge sigh of relief. Happy to hear you are well.
It is so discouraging that the data is so scarce and contradictory indeed! We are left with “wait and see” “watch your moods” “hope to catch it early.” I did participate in a study already at MassGeneral - I swabbed my cheek and sent in my DNA to research genetic links. Hopefully they’ll know in a few years something more concrete. If there are any more studies I will gladly participate. I have a daughter too so I know she will be at higher risk than the general population for this disease. Hopefully by the time she is of childbearing age - we’ll know more about this horrific disease and prevention. I wish OBGYNs warned about this. I know it’s rare but not THAT rare. 1 in 1000 is the same rate as Down Syndrome and everyone knows about that. It’s such a dangerous disease - so even a small mention to ALL moms should be pertinent. I had no idea what was happening to me and neither did my family. We were all horrified.
Anyway, I’ll get off my soapbox. I am so happy to have found this community. I’ve read many of your thoughtful responses in other posts. Looking forward to staying in touch in this community!
Thank you so much for your kindness, have a great weekend!
I rode for many years when I was younger, also! In fact, horses were really my guilty pleasure right up until the time I got pregnant with my second child, and then the PP just leveled that dream along with my career and a good chunk of my life. It wasn't until two years ago that I got off the antipsychotics altogether, joined a great fitness program and got back in shape, and lost 65 pounds that I got back on a horse just last month. I almost wish I could post the picture here. It was a big, BIG moment in my life to be able to do that again. Huge. I literally feel like I lost my entire life, and then got it back again. Most people look at the photo and say, good for you at your age.. but they don't know the hell I went through to get to that point. I always think to myself, "You don't even know."
I really do know what you mean when you say the experience was so awful, so terrifying, you don't want to take any chance of experiencing it again. It was hell on earth. I've had cancer treatment twice and eight related surgeries, and I'm here to tell you, if you asked me which was worse, PP or cancer, I'd say PP all day long. No question. Chemo treatment is hell too, BUT, people understand it, people bend over backwards to help you, and there's never any question in people's minds. Psychosis is the complete opposite.
I'm glad to hear you're in the USA, because that means you'll have access to medications that have fewer side effects, and that could help you. Olanzapine is sold under the brand name Zyprexa, and I actually never took it because of the weight gain profile. It is one of the worst meds for weight gain. I did not know that it's considered safe after 35 weeks of pregnancy, and I'm glad to hear you can safely wait until then to take it, because these are serious drugs. It might be that Olanzapine is better studied than the others for pregnancy. I wonder if you can get through the pregnancy with that medication and then switch to one that has less of a weight gain profile? All antipsychotics in that class have that effect to some degree, though not everyone experiences it (I did.) However, Abilify, Latuda and Vraylar have a much lower incidence of weight gain, and that could help you at least not continue to gain after the baby is born. I did well on Latuda as far as side effects, and while I did not lose weight until after I stopped it, I didn't continue to gain weight either. I gained quite a lot on Risperdal, Seroquel, and Geodon, and after cancer treatment I gained some too, a total of about 100 pounds. It has not been easy trying to lose it again. If you have options that would help you not gain too much, I would have a serious discussion with your doctor about that. Even if you have to give up nursing the baby, preventing a large weight gain is worth it. It's pretty hard to get the weight off again. If you have or are close to diabetes or gestational diabetes, I'd be particularly careful. You may even be able to take meds like Ozempic for diabetes, which will help with appetite. Another conversation to be had with your doctor. It sounds like they're not expecting you to have to take it for more than nine months after the birth, and that's encouraging. If I were you I would tell the doctor your concerns about weight gain and try hard to get them to work with you on options to prevent that. Tell them, it's not the cosmetic aspect of it that concerns you, it's your health, and your future health. Trust me when I say that a 100 pound weight gain had devastating effects on my life, as well as my mental health in general.
I saw you asked me on another post about relapses so I'll address that also. I was taking antipsychotics all during the time after I was first hospitalized. I continued to be re-hospitalized every other month or so - five times during the first year. I just never stabilized well. I'm still trying to understand why, and I'm actually working with someone right now who is trying to help me make sense of it. It may have just been the amount of stress I was under, because I was still working. After I was first hospitalized, I went home after two weeks and went right back to work the following Monday. I had a really stressful job, plus I had two very young children at home, and I just couldn't cope. It took me a few years to stabilize. I'm not 100% sure that I was actually psychotic during those episodes. I was very depressed and quite suicidal. Some of what I thought were voices in my head, I now wonder if it was something more like OCD. I've recently been told that I'm not bipolar, either. So I'm not totally sure.
I'm totally with you on the mystery of why no one tells new mothers about this, and that's exactly why I'm here and why I try to talk to people about it now. I'm working with PSI in the US, and I'm actually getting ready to start writing a memoir. I started it years ago and never finished it, and I'm doing some prewriting work again. I too had no idea what was happening to me. I didn't even know that I was psychotic until I went to the hospital and they told me I was experiencing psychosis. It's bad enough that women have to suffer from this; at least someone should learn to recognize it.
Finally, I'm glad you like the screen name I chose. During the time I was ill, one of the things I did to get me through was to color and paint. Not great art, but for some reason my box of paints and pencils made sense to me, when nothing else did. Color is one of the main things that got me through, I suppose because it brought me back to the moment and back to reality. And somehow I survived it all.
Now, off of MY soapbox. Hope that was helpful to you. Write anytime.
Yea, after coming back from “hell on earth” - people indeed don’t even know! - the hard road back to ❤️🩹 recovery. So so happy to hear that you have lost the weight, and back to riding again and most importantly no longer on antipsychotics and NOT experiencing psychosis.
It sounds like it was an incredibly difficult time for you that first year - in and out of the hospital. The subsequent episodes I take it were different. (Still not that much easier - feeling suicidal is frightening. The most frightening thing about it is that at the time you actually don’t feel scared at all - you just feel like it’s the only way out. (Not true) And that is what’s frightening about it. As well as just feeling generally dreadful and sh*tty. I am glad we are both on the other side of that now.
I have done well on Zyprexa. (The weight gain def. sucks but luckily no other symptoms). I think that because it worked so well for me the first time - they want to stick with what works. Unless I have a different reaction next time. I have heard of Abilify and many people like that apparently and also don’t gain as much weight.
I will keep tabs on my moods. And hope to catch anything if it occurs early and get on medications again straight away. But you’re right - it’s not a good idea to stay on them for years just preventatively.
I’ll be on Lamotrigine and Zoloft for awhile but hope to get off that in a couple of years as well. We’ll see.
Also I find writing to be therapeutic. I think working on a memoir is a beautiful endeavor especially after everything you’ve been through and came out on the other side. I hope you continue it.
That sounds like a good plan and largely what I’ve done over the years - really keep tabs on the moods so you can catch it quick. I always tell my husband when I’m doing any kind of medication change, and I see a therapist regularly to this day. It just helps me work out what’s normal and what’s due to mental health issues. I still take Bupropion and have done very well on that; and I still take Lamotrigibe but I’m cutting down on that too now to see what happens. I’m wondering if part of my mood fluctuations are more seasonal, actually. I’m working with a new psychologist on that. Interestingly, after I started telling her my story and we got through the part of the first ten months when I couldn’t get help, she said she was just amazed that I survived. Im excited to get going on the memoir again.
Congratulations on the birth of your daughter. Just sorry you had to experience PP. I had my episode of PP back on 2002 with my first born. I can understand your feelings of anxiety about the future. I remember feeling the same anxiety myself. Like you, my episode was out of the blue. Ten days after giving birth I was admitted to a psychiatric ward where I stayed for a month before a bed became free in a mother and baby unit where I could have my son with me. I stayed in the MBU for about 2 months and came off all my medication when my son was 2 year and 2 months old. I had a depressive episode following the psychosis and I actually found this worse than the psychosis as I'd never had depression before and I really struggled with it.
Since I recovered, I have gone on to have another child and I fortunately stayed well. I took medication prophylactically from the day my second child was born. I can't remember now how long I was on that for - it may have been a similar period of time. I actually found having a second child very healing. I had thought that I didn't like the baby stage because I'd found it so tough but I realised that I did like babies and I'd just been really unwell. I think realising that allowed me to heal as I realised any shortcomings I felt, had been out of my control.
I'm currently going through the perimenopause and so far so good. I am on HRT because I felt this was important for me, partly to keep my hormones balanced but also due to other factors.
The only advice I was given after having PP was that if at any time I had a period where I struggled to sleep, I should seek advice and get some sleeping tablets. Lack of sleep was a major factor in my illness. I didn't sleep for 3 days before I was taken into hospital.
Your illness is very fresh in your mind at the moment which is understandable but mine was now nearly 22 years ago. It is important to know what your signs of relapse are so that you and your partner can recognise any relapse early. I did a relapse prevention course after I recovered as my original diagnosis was bi-polar but they amended it to PP when I didn't have another episode. I have stopped worrying about a relapse somewhere on my journey - I couldn't tell you exactly when that happened but I hope that happens for you at some point too.
It's hard getting over PP. Not just the actual illness but the uncertainty it creates and the emotional rollercoaster that follows.
I wish you luck for the future and whatever happens, you are not alone.
Hi Redtap! And thank you so much for your encouraging and thoughtful response. So happy to hear that you have stayed well. And congratulations on being a family of four! I too am hoping for a second child and hoping that the next experience will be healing. I really hope it will be different. I plan on taking medication prophylactically as well.
I live in the US so unfortunately no mother and baby units here so I had to stay in the general psych ward. I didn’t sleep for 5 days prior to my PP also; and I too suffered severe depression immediately after the psychosis, which was just as frightening. They also gave me the bipolar diagnosis in the hospital but then my psychiatrist reversed it to and said it’s too early to tell. I’m glad to be recovered now and of course hope it stays that way; and happy to hear your story and happy ending.
I will be very mindful of my sleep and work out a relapse prevention plan (triggers, etc.) like you suggested. Many on here seem to have done that and I think it gives us back a sense of control of the situation.
I do hope to get pass the anxiety of it all but realize it will take some time.
I’ll be careful around menopause as well.
Thank you so much. Take care as well and enjoy your weekend!
I’m Rachel, I had pp after the birth of my first child in 2016. I did go on to have a second child in 2020, will no reoccurrence of pp.
I’m sorry you had such a tough time but glad you are doing well 11 months down the road.
I know Jenny and a few others have shared some information with you but with regards to the illness reoccurring it can be a scary thought. But you can hopefully recognise some signs early on or your partner/family can.
One tip I was given to cope with anxiety was to write down any worries you have. Sometimes just getting them down on paper and out of your brain is helpful.
Hi! Thank you for your response. Glad to hear you have remained well and even went on to have another child without a reoccurrence! I hope the same happens to me.
I have written out some of my worst fears as part of an exercise with my psychologist. I think the next step is to write down triggers and a reoccurrence safety plan just in case. I think that will put me more at easy - knowing exactly what we will do in case of an emergency.
Congratulations on battling through PP and writing so clearly after only 11 months. I was treated under general mixed psychiatric care in an asylum decades ago, four weeks after giving birth, at the age of 23. I was very poorly at the time and needed ECT to bring me back from the brink. There were no mother and baby units in those days and so I was separated from my first son for months. I was also hit with severe depression. I didn’t realise how ill I had been, or indeed no idea about PP as in those days mental health was very much in the shadows way back when.
Six years later we decided to have a second child and were delighted to have another son. My late husband noticed similar traits in my behaviour, i.e delusions, hearing a commanding voice. I was again sectioned to psychiatric care, without my newborn. I also had severe depression again.
Thankfully there is more awareness today and perhaps if I had been monitored closely, my second episode would not have occurred. Looking back I have been through the mill but blessed with my sons and their families.
I’m glad you have found this community from across the miles and also support from mums in the USA. I’m not sure whether you have been in touch with Postpartum Support International (postpartum.net) for support locally although notice that one of the mums replying might be a volunteer there? Of course, you are always very welcome to write here. I think it’s very therapeutic to write things down so they are out of your head.
I hope you are very proud of how far you have come and wish you all the best in your recovery 🌻
Hi Lilybeth! Thank you so much for replying and sharing your incredible story. Gosh, I’m so sorry you had to go through that twice. That is incredibly distressing and well… terrifying I’m sure. (Commanding voices sounds so frightening. Mine felt like my body was taken over by a force and about to do very harmful things. Fortunately I fought and yelled against the “force” and my husband called emergency services as it was clear I was having a psychotic attack. Terrifying stuff. I’m still angry that OBGYN’s and doctors in general don’t talk about this to pregnant women and warn that this can happen. We were caught by complete surprise as were you it sounds like (the first time).
So glad you were able to get treatment both times and have recovered. Also congratulations on having 2 boys! I take it they are grown up now and have families of their own. That is a blessing indeed. I’m sorry about the loss of your husband, it sounds like he was a supportive partner
My psychiatrist mentioned ECT to me - she said in case medication doesn’t work for me the second time - ECT is a good back up option and works for almost all people. Did you have to have ECT both times? Did you experience any short-term memory problems after the treatments? I hear that’s a side effect sometimes. Was ECT very challenging? Of course getting better ultimately is what matters.
I am involved with PSI - they have support Zoom phone calls every Monday evening for PPP survivors. I found that resource to be very valuable early on. A lot of the people that attend have it happen recently (within a year). I’m happy to chat with women on here who have had it happen years ago - to see how they have coped through the years and what their experience have been and what I can expect. I know everyone’s situation is different but I think we can learn from each other especially with coping strategies and looking after our own mental health.
Thank you for taking time out to reply. I am so fortunate to have recovered and spent many happy years as a family of four. My sons are very supportive and have families of their own … my grandchildren are priceless 😊
Hopefully medication has improved since my episodes. I was very suicidal and the doctors decided medication alone wasn’t working. So, on my behalf, my husband agreed that I could try ECT. It was a game changer for me during both episodes in tandem with medication. Coming round after treatment I remember the headaches but didn’t have any memory loss or side effects. I think nowadays they have ECT ‘suites’ in the mother and baby units but as a mixed ward we all stood in a line outside the room waiting in turn. As the sessions progressed and I became more aware of the procedure, I did find it challenging but knew I was turning a corner towards my recovery. Being able to go home eventually was a great motivator.
it’s good that you are involved with PSI as we are such a unique and special band of mothers! Being in the company of women who truly understand is so comforting. My rebuke now to PP is Elton John’s “I’m Still Standing” …. as by good grace we all are!
Thank you for listening. Wrap yourself in the comfort blanket of home and take care 💝
Thank you so much for sharing your experience with ECT; although the headaches sound frustrating - like you said, you were getting yourself back and that was motivating.
I hope to never have to go through that again, but if I do, I know what medications have worked for me in the past (I was given 2 antipsychotic injections in hospital and then put on antipsychotics, a mood stabilizer and an antidepressant) but if all else fails I know there is ECT.
Enjoy your grand babies and a peace of mind that the worst is behind you. So happy to read stories of healing.
You’re very welcome, as you say I think we can all learn from each other. Thankfully for some mums here PP did not return. It’s good that you are very aware and your psychiatrist understands.
Talking about how you feel is important so I hope the Zoom PSI support groups are helpful for all with shared experiences. APP has similar cafe groups, sometimes meeting in person or, if not, via Zoom. So it’s good to see how everyone is doing in different stages of their recovery and I love the company.
Also PSI is a great resource - APP (Action on Postpartum Psychosis) seems like the leading organization on this disease specifically. They have a lot of articles and videos and guides which I have not found at PSI yet.
Yes, PSI is a great resource across the globe. APP have lots of articles and links to various guides which are so needed to explain the crisis of PP to mums suffering and their families. Perhaps PSI will provide similar in the future. Thanks for writing.
some great responses. Yet I do believe we have to distinguish between recovery of PPP and anxiety issues on a BP1 spectrum.
With the recovery of PPP my anxiety was so severe that I needed to re-learn skills. The first few years I often was freezing in super markets and struggling with panic attacks. My brain was traumatised and I was very much on survival mode.
I continued to live with social anxiety and agora phobia, I was diagnosed with this, but eventually it was identified as part of my spectrum.
I have created a toolbox of coping strategies and depending on my mood I attempt to plan my routine. It is easier said than done, therefore long term planning can be rather daunting.
Recently I have been working with exposure therapy, where I force myself to confront fears. It has been an exhausting process, but each week is becoming easier.
I have to do it at my own pace and in stepping stones, simultaneously trying to figure out my limitations.
I am learning marshal art now, where I have to be in direct contact with individuals. I particulalry struggled with male strangers. I am becoming braver
I believe you are doing exceptionally well and your recovery has been remarkable. What kind of support do you have with regards to BP? Happy to private chat.
I had my episode 2 weeks postpartum. I am nearly three years down the line and slowly coming off Olanzapine. I'm down to 0.625mg.
I've not had any diagnosis aside from the PPP however I have researched and researched to find answers of why it happened and the likelihood of it happening again. I have found some similarities between my personality and bipolar however I've also found a lot of things that do not apply.
I know from a few woman I've spoken to that a lot of them were diagnosed bipolar so I'm thinking it's quite a common diagnosis after PPP.
How did you find coming off Olanzapine? Did you sleep well? I found the first time I couldn't sleep at all and decided to go back on. I wish now I had seen things through and tried to fight through it however I was scared of becoming unwell again.
I came off Olanzapine completely about a month ago I think. After my PPP I was on 15mg, then went down to 10, then 5mg for about 6 months, then 2.5mg for 2 months then completely off. I didn’t experience any insomnia after I came off but if I did - I would’ve probably made the same choice as you and just stayed on. It’s good to come off very slowly so your body doesn’t know the difference too much. I started to lose weight so that’s a plus. I am still on an antidepressant (Zoloft) and a mood stabilizer (Lamotrigine) and my psychiatrist says I will stay on those until I’m done having kids and at least a year postpartum. So probably 2-3 more years. Which is fine. I plan on being on Olanzapine again as a preventative after giving birth - again for a course of a year.
I, like you, have researched over and over again and read there is a link between Bipolar and PPP. In fact there is not even a diagnosis of PPP in DSM-5 (Diagnostic Manual of Psychological diseases) - it just falls under the Bipolar spectrum disorders. But I do think that is incorrect and hopefully will be updated. My understanding is that about half of women go on to be diagnosed with Bipolar and half don’t. Of course we all hope that we are in the latter half. One solace I do have is that if I am diagnosed with it - they know how to treat it and manage it and you can live a full life, even with a BP diagnosis. But here is to hoping we don’t have to.
Another theme that I see - is you can be well for years - but during menopause (or rather perimenopause) - a relapse can happen. Either mania or severe depression or even psychosis. So we have to be very vigilant during that time also. From what people have written on here - I think if I ever experience the slightest mood changes during that time - I will consider going on preventative medication. (An antidepressant and a mood stabilizer again; and if that doesn’t work then add olanzapine again). I have an appointment coming up with my psychiatrist and will discuss all this with her.
I’m trying not to worry too much about a BP diagnosis and/or another relapse, but it’s hard. I hope with time it passes. But from this point forward I will always see a psychiatrist and a therapist. It’s part of my routine care now. So that’s different in my life.
Glad to hear you have been well for 3 years! That’s something to celebrate! I hope slowly but surely you will come off Olanzapine altogether and stay well.
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Does anyone get flashbacks 
Has anyone had short episodes of psychosis?
Weird Feeling 
Postpartem anxiety/ocd/panic
PPP 9 months after delivery
