Please feel free to share/add your stories in the comments.
Hi all. I suffered from PP a little over a year ago. Fortunately the medications worked relatively quickly and I have remained well. I’m off of the antipsychotics now but remain on an antidepressant and a mood stabilizer as a precaution for another year or so.
I have reached out to many of you on here who are farther down the line on their healing journey, some 5 years some 15 and some over 20 years. I have also spoken to several people on weekly phone calls through PSI (US based PP support network).
Of course this is anecdotal evidence but I’ll list below some overwhelming themes. It seems that about half of the people went on to have a bipolar diagnosis. (A lot depends on previous history, the PP episode itself and subsequent episodes.) But for those that didn’t have Bipolar and who remained well for years (7… 10, etc.) and then had psychosis again - it didn’t seem random. Even the APP website suggests that women can be well for years but then about 30% relapse in perimenopause. (Of course some women don’t have any episodes at all and that would be ideal)
Some other themes I heard or read were lack of sleep due to:
A very stressful event like a death in the family. Grief with lack of sleep seemed to have contributed to psychosis.
A horrible cold/flu/coughing virus that prevented one from sleeping for a few nights in a row - some women went on to have a relapse
Some causes seemed to have been hormonal:
Cessation of breastfeeding while unmedicated
Resuming periods (while unmedicated)
Miscarriage
Perimenopause
So I wonder if it makes sense to speak to our psychiatrist teams during these moments of stress and take some sort of medications during these vulnerable times? Like a sleep aid? Or a a mood stabilizer or even an antipsychotic on a low dose? Or simply just be aware that we are vulnerable during these times so that if we begin to notice any symptoms that we are “off” - reach out to the psychiatrist straight away.
I know it’s not possible to predict with 100% accuracy who will relapse and who will not but I think it would be helpful for all of us to share what our experiences have been and how we can help each other long term on managing our mental health.
May be there will be more studies on this (prevention) and universities can use this website for observational resources.
Please feel free to share thoughts/opinions/stories.
Happy New Year to all & stay well and safe! Many blessings to this beloved community. We are a special bunch of moms
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EquineBeauty
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Thank you for sharing your thoughts and observations here, it is interesting to see the anecdotal experiences you have collated from reaching out to others.
One of the FAQs on our website (app-network.org/postpartum-... asks about the likelihood of having an episode of psychiatric illness at other times, with the information provided as follows:
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).
I think you are right that it is just so important that we look after ourselves. It’s hard to know or predict the likelihood of being unwell in the future, but it’s helpful to be aware of times where we may be more vulnerable (such as times of hormonal change and times of high stress), to keep an eye on any significant changes in mood and reach out if we or those close to us are concerned.
It’s important too I think to find a balance between having this self-awareness and trying not to get very anxious about the risk of future illness. I have so far stayed well since I experienced PP in 2012 but still do worry a bit when I go through periods of bad sleep. Hearing about and learning from others' experiences has made me more vigilant, but also reassures me that support is out there if needed. I know I’ll be conscious when I approach the perimenopause/menopause and will reach out to my GP if I am concerned about any significant changes in my mood etc.
Take good care and thank you again for sharing here 😊
Hi again Jenny!! Thanks so much for your post and reply and for linking the APP written portion regarding perimenopause - this is what I was referring to in my post. I just wanted to share with others what I have found as it was helpful to me to know that these possible episodes aren’t random. (I know that’s not 100% true and not verifiable… just my own observation from speaking to a very small size of people.) This actually calmed my anxiety regarding the future a bit because I feel like I would have at least some control. I didn’t want to confuse anyone on here - so I def. wanted to clarify that these are just my own thoughts and observations.
But in the end you are correct - it can’t be fully predicted as everyone’s history and diagnosis are unique and we also can’t live with anxiety regarding the future. We just have to be vigilant regarding our moods & times of high stress as well as little sleep and know that help is available.
Thank you so much for clarifying/posting and for all your continuous support on here.
And also - thank you for sharing your own experience. It’s so encouraging to know you have remained well for so long!!
Just to share my own experience. After my episode of PP back in 2002 my psychiatrist told me that if I ever had a period of time where I wasn't sleeping properly (for any reason) that I needed to contact my GP to get some sleeping tablets to make sure I got some sleep.
Also I was sent on a relapse prevention course. This was really useful as it highlighted what my early symptoms of becoming unwell were so that if I started behaving in those specific ways I could recognise that I might be becoming unwell and could seek help.
I don't know if this is something that they still offer but I would suggest that it is a useful tool to have.
I personally found the depression following the psychosis worse than the psychosis itself and I have found that keeping physically active (which is not always possible with young children) has been very beneficial to my mental health. Going to the gym, doing an exercise class or going for a walk always puts me in a good mood.
I think it is useful to share what has worked for you with others and I hope this is useful to someone.
This is so helpful. Thank you so much for sharing this! So my psychiatrist never actually advised this (what yours did) but after reading many stories on here and women who did experience relapse due to lack of sleep that is exactly what I did. I couldn’t sleep for several nights due to a horrible virus/cough and I reached out to my psychiatrist for sleeping tablets.
I would be interested in a relapse prevention course. That sounds helpful. Do you remember where you took that? I did write down my symptoms after my PP to keep mindful of my mental health and to watch out for similar symptoms in the future.
Now that my daughter is a little older I have returned to the gym while she is in daycare so I can get back to a regular exercise regiment. Thank you so much for sharing!!
Exercise, yes! The exercise program I go to now has been absolutely instrumental in improving my mental health. The key parts that make it successful are that I take regular classes, and have gotten to know a bunch of people while doing it. I'm not just trying to walk or run on my own, or go to a gym and work out on machines, an activity which I never failed to find depressing and unmotivating. The social aspect of it is just as important as the classes themselves. This could be more difficult for you to do with a baby in tow, but if you can get a babysitter, I highly, highly recommend this.
That’s a great idea. I have been wanting to take dancing lessons for awhile now. I wonder if I can find a studio that has lessons during the day on certain days of the week while she is at daycare. Activities do sound much better than running solo 😅
Try ballroom dancing! My daughter does this and loves it. There are some great communities out there. Also square dancing, line dancing… it’s fun and good activity too. Go at least twice a week or add in something else to get the cardio benefit. A moderate to high intensity is needed to release endorphins and affect that mood.
I lived in Manchester at the time of my episode so it was through the NHS in Manchester that I did the relapse prevention course. That was over 20 years ago so I don't know if they still do it but it might be worth asking your GP.
I'm glad you found that information useful. Glad you're enjoying the gym again.
“just be aware that we are vulnerable during these times so that if we begin to notice any symptoms that we are “off” - reach out to the psychiatrist straight away.”
There isn’t a predictable pattern for PP that describes everyone. It’s unlike other physical illnesses such as the flu where everyone has basically the same symptoms, a common reason for onset and a similar recovery rate. Research hasn’t yet reached the point where conditions like PP can be predicted or cured. Until then, it falls upon us to be vigilant, to learn as much as we can about the illness and about ourselves, so that when it crops up we can recognize it before it gets out of hand. It’s up to us to do the things we can to prevent it, with sleep hygiene and medication and check-in’s with our psychiatrists and therapists. I had PP 20 years ago and whatever I have now (perhaps schizoaffective disorder) seems to be in remission. But I see a psychiatrist and a therapist to this day. I don’t see them a lot, but I keep that system in place in case I do start struggling - I can place a couple calls and be seen immediately. Incidentally, I do the same thing as a cancer survivor. I do my breast self exams, I pay attention to any unusual symptoms I have, I get a mammogram done every year, and I go have a checkup with my oncologist every six months. I’ll be doing that for the rest of my life, so it’s just routine now.
Oh yes, mental health hygiene (just like you’re doing for cancer prevention/management) is now just a must and will be part of routine care. I will also have my psychiatrist and therapist contacts at the ready now in case I need them quickly. Keeping being aware of moods and good sleep hygiene are vital; I was just more listing times in life that could be triggering and therefore can make us more vulnerable so to be particularly more vigilant. (Example: miscarriage). That’s not to say that something will absolutely happen (it may not) but it can be a trigger for some women, so just good to be aware and I wanted to share 🙂
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