Recovery Update

[AinslW]

I had PPP after our son was stillborn June 2022. I wanted to hop on here to update you all on my recovery and get feedback. I’m off the lithium now and just started on Latuda so now I’m on Latuda, Zoloft, olanzapine, and Temazepam. It’s all the lowest possible dose except for the Zoloft. I’ve been diagnosed with bipolar 1. I’m having a hard time wrapping my head around the bipolar diagnosis even though in my heart of hearts I know it’s true. I had been periodically depressed or hypomanic from puberty onward and it caused a lot of issues in my life (sexually, chemically, legally) for a long time. I finally got into addiction recovery and the hypomania episodes subsided for a number of years though I had some brief breakthrough mania at times and periods of depression again. So when I went manic and psychotic after our son was born I was in the hospital 3 times for a total of 3 weeks (it seems that hospitalizations in the U.S. are much shorter than in the UK…..). I have so much trauma from those 3 weeks with the fragmenting of my mind and such heavy meds and not sleeping and thinking I was going to die. And then trauma from the weeks after just staring into space for hours at a time bc I was such a zombie. And then the agoraphobia has been bad. I’m afraid to leave my house a lot bc I’m afraid I can’t handle it. I’m slowly getting some confidence back and going back to work has helped with that. I’m feeling more balanced as I’m incorporating martial arts, yoga, art, and music into my routine. I’m trying to cook rich and hearty meals to nourish my body and drink lots of water. I’m afraid that my psychiatrist won’t be able to find safe medications for me to get pregnant on and it will harm the baby if we do get pregnant. But I’m equally worried about a bad relapse if I go off medication. Feedback on any or all of this and personal experience is so appreciated. Thank you. X

[Kat_at_APP Volunteer]

Dear AinsIW. - thank you for posting an update. It is inspiring, reading about all that you’re doing to protect your mental health. And fantastic that you have been able to get back to work too. There are a lot of us here who have been given bipolar diagnoses, so I’d you search the forum for “bipolar diagnosis” you’ll get to read lots of discussions around this. You might also be interested in the recordings of some webinars that the charity Bipolar UK ran last year - particularly around hormones and mood.

bipolaruk.org/blog/women-an...

Regarding medications and pregnancy - I think APP has some information on that in their Insider Guide to planning another pregnancy after PP.

app-network.org/wp-content/...

There is also quite a lot of information on official websites. I think you might be in the US? If so then the CDC website might be helpful to you: cdc.gov/pregnancy/meds/trea...

Whatever you decide around medication use, remember that you are in control and what is right for one woman might not necessarily be right for another. We are all different, with different risk profiles too.

I would also be keen that you can access talking therapy. What you’ve been through sounds so awfully traumatic. While you are doing incredibly well, the stress of another pregnancy after a loss could be really anxiety-provoking. Some counselling / psychotherapy might be able to help with this.

All my very best wishes,

Kat x

[AinslW in reply to Kat_at_APP]

KatG,

Thank you for your reply. I’m trying so hard to protect my mental health but 8 months out I still feel incredibly fragile and vulnerable. My bipolar medications are not balanced so we are still trying to find the right types and dosages and that is really discouraging because it seems like it’s taking so long. And then things happen like I ran out of one medication 2 days ago and was just now able to get it and so now my body is out of whack from going 2 days without it. :/ It seems like things like that happen often and just when it feels like we are making some positive progress there’s a big stumbling block. It’s hard to be patient with the process. And I worry about how it will affect my two children as well having a mother who is struggling so much. It’s all a lot. I feel like I do have some people I can talk to about it but I probably need to go to a BP support group in order to really get the support I need… I have been in talk therapy since I got out of the hospital though. I recently changed therapists because I stalled out with my previous one, and I’m very hopeful that the new one will be better, and so far it definitely is. My family is also pooling resources to send me to a trauma intensive retreat in June. Hoping all these things will come together for a stable recovery. Hopefully we can continue to be successful at avoiding pregnancy for a few more months while I get stable.

[hgallo Volunteer]

Hi ainsiw, it's good to hear from you again. I think you are an incredible lady first of all. You've been through a lifetime of sorrow in such a short time..Kat G is right about talking therapy when you feel the time is right for you.I got diagnosed with BP too recently and am also finding it hard to process. But like you I feel it fits with how I've been. I don't know how medics work in the US. In the UK you can be referred to a perinatal specialist for preconception advice when you have BP. They can talk you through risks, meds and after care.

My girls were conceived on the forth round of ivf and we experienced a lot of loss in those years. So I just want you to know I hear your grief and also that drive to have a family. I wish you so much luck. Please keep in touch. We are all here for you x

[Jenny_at_APP Partner]

Hi AinsIW,

Thank you for posting again, it's lovely to hear from you. It sounds like you are doing so much in trying to look after yourself - body, mind and soul. I'm sure being proactive in this way will really help you find the tools you need to manage this ongoing journey. I hear your frustrations with how long it all feels to be taking, and the ups and downs along the way, but I'm sure you will get there.

I hope you find some stability in your medications soon, and it's great to hear you have good support around you - that you're getting on well with your new therapist so far and your family are hoping to help you with further intensive support as well.

I don't have any relevant personal experience to share but just wanted to write some words of encouragement - it sounds like you're one amazing lady.

Sending you very best wishes,

Jenny x

[SJSharks]

Hi AinsIW,

I am bipolar 1. I was diagnosed as a teenager and had been hospitalized. On the meds I didn’t feel like myself and I gained 60lbs. I decided to stop taking them. Fast forward when I got married I had my second manic episode and was hospitalized again. But again I didn’t believe the diagnosis and I stopped taking the meds. Then after the birth of my son in 2020 I had my third manic episode which turned into postpaturm psychosis.

They again told me I was bipolar and I finally accepted the fact. It’s still difficult because aside from my three manic episodes I don’t get the highs and lows. I had only been depressed as a teenager. I did get postpaturm depression but I feel it had a lot to do with being away from my newborn for 2.5 weeks and dealing with the trauma from my episode.

They had me on lithium and another drug I can’t remember. But it was the same med combination that I had been on my last two episodes and I knew they weren’t going to work. So I advocated non stop until I got on Latuda.

We wanted another baby so I asked about meds that would be safe for pregnancy and breastfeeding. I was told Olazapine.

I was fortunate in that I stayed well through out my pregnancy so I never had to take it. I took it for two weeks after my daughter was born and I felt really good. I didn’t feel it was because of the meds so I got permission to be off them while I’m breastfeeding. I didn’t relapse.

A few things helped. Understanding my triggers which is stress and not sleeping. I bought red night lights which promotes sleep but also lights the room enough so I can easily feed my daughter / change her diaper at nighttime.

Better education. I did a lot of research on what it means to be bipolar and why it doesn’t necessarily mix well with pregnancy. I did a lot of research about breastfeeding because I didn’t get to do that with my son.

I had nighttime help for the first 5 nights. It was supposed to be more but it wasn’t a good fit. I’m not sure if it made a big impact but I can’t rule it out completely.

And lastly I’ve always had a difficult relationship with God. After the birth of my daughter I almost died and long story but I finally was able to welcome God into my life and understand what I needed to learn from my prior manic episodes. The power of prayer is real. I know a large part as to why I’m well is thanks to my faith.

Take care and work with your professional team. I decided to change my psychiatrist and therapist halfway through my pregnancy and I’m really glad I did.

[MotherOfBears]

Hello

You have been through so much and my heart goes out to you. Please do feel free to update us on how you are and ask questions as much as you like.

I don’t have any advice to recommend, as the trained APP volunteers on here have covered everything I’m aware of. I would say that I know plenty of people have gone on to have more babies after PPP and so there must be drugs that work in pregnancy?

When you say “My bipolar medications are not balanced so we are still trying to find the right types and dosages and that is really discouraging because it seems like it’s taking so long.” I can really relate. I had a manic episode with a degree of PPP last June when my son was 9 weeks old. My mood has been really unstable since, I get severe depressive episodes. I needed to go back into hospital last month to start me on a more aggressive treatment. It has take for EVER to ween onto the full dose (7 weeks already) and it will be a few weeks until we know if it has worked.

I really feel you. It sounds like you are doing tons of self care. It strikes me that this could be quite busy and draining also? If you resonate with that, perhaps make sure you are kind to yourself and give yourself the time to just be how you are in the moment. Healing will take time, and can’t be speeded up - something I am personally struggling with.

Another thing I would mention is that I found the memoir Inferno by Catherine Cho quite healing. It might be too much for some, but I found it gave me strength. It is about her experience of having PPP in the US and is beautifully written.