Recovery process

[BarboraO]

Finding myself in the middle of the recovery process. One huge positive step and a milestone will be coming of antipsychotic medication completely next week, six more days to go! Can’t wait to restore myself and have the full liberty of my mind again.

Guided by my EI team tapering down the medicine (Risperidone) it has been gradually reduced over the course of last 6months. Despite me being very eager to come of it as soon as possible, I have been patient and diligent following their advise closely and advise of my Perinatal MH team prior to that up until my daughter turned one.

I have experienced a full blown Postpartum Psychosis in April 2019, 5 weeks following my daughters birth so we have, earlier this year, passed some significant anniversaries. My treatment included 4 months at MBU with four antipsychotics meds changes (began on Haloperidol, then Aripriprazole, then Quitaipine and finally Risperidone) a really long winded search for one which didn’t cause horrendous side effects. Alongside this biochemical treatment I have eventually two months into my MBU admission began psychotherapy with a clinical psychologist and this allowed for much deeper healing of the trauma which stayed residue from the psychosis. This meant to continue now yet because of the lockdown it has been paused.

Is anyone else experiencing the postponed and paused psychotherapy during lockdown an issue? Or do you use video calls?

I had nine sessions with my perinatal clinical psychologist but then my daughter turned one and her input was over and we have carefully planned a handover to a private psychologist, had one session and the lockdown happened.

Speaking with the peer support worker Ellie here from APP has been therefore wonderful and so healing💛 I am so grateful to have her support when the therapy isn’t available.

I guess further to the above question on psychotherapy I would like to ask:

How was it for you coming of the antipsychotics?

I feels like such a long time (14 months in my case) to be under what my GP described as chemical straitjacket effect and influence over my brain and the search for the right treatment, the biochemical cocktail of four different meds! Although a little apprehensive as everyone keeps mentioning the R word (Relapse!) I am looking forward to having the full freedom and liberty of my mind being my own again.

And what about the extra weight I am carrying? People keep talking about the new lockdown body shape, yet in my case I have been steadily putting on weight since being on the meds, I was glowing and in good shape all throughout the pregnancy but then began expanding on the antipsychotics.

How do you/did you manage to tackle the extra weight put on due to antipsychotics? Or is this my new post PP recovery normal? (As of last week my BMI suggests I am obese which is just ridiculous, I have never been this huge before)

Thank you for reading all the way down here, my first post so getting a lot out of my system!

[Lilybeth Volunteer]

Hello BarboraO

Congratulations for reaching the brink of achieving the milestone of being free of your antipsychotic medication! Not easy at all but such a relief, as I felt it was finally a step in the right direction for me.

Welcome to the forum and thank you for sharing your experience. I'm sure Ellie has signposted you to some helpful resources and advice. I had PP twice many years ago and was treated under mixed general psychiatric care as there were no MBUs in those days.

I'm sorry to hear your psychotherapy sessions have been paused due to the lockdown restrictions. Do you think your private psychologist would be able to offer video calls via skype or zoom as an alternative? I think some GPs are offering such calls at the moment.

I also wonder if Mindfulness therapy would be helpful during this pause as it is listed as a type of psychotherapy? There is some information with videos on YouTube which you might like to consider.

I think some medications do have the side effect of weight gain but try not to worry at this stage as you have done really well to be in the middle of your recovery phase. As restrictions are lifted we will be allowed to exercise more which is good for our health in general.

The forum is a great safe space to unwind and find brilliant support from mums who have endured the trauma of PP. Over the years I have found lots of reassurance here as I hope you will too.

Wrap yourself in the comfort blanket of home and take care .... we are always here to listen.

[BarboraO in reply to Lilybeth]

Thank you Lilybeth I will look into Mindfulness therapy as it sounds great and for your extensive reply. I find great comfort knowing I am not the only one on this journey.

[Lilybeth Volunteer in reply to BarboraO]

Hello BarboraO

You are definitely not alone, we are all here for you

I hope you are very proud of how far you have come ... please take your time to be well.

[coffeemom2]

Hi! I was on risperidone, tapered off after my daughter was 14 months, slowly, over the course of 6 months. It was the Zoloft that worked best for me, so I am still on that, but half the dosage. Since i tend to be anxious anyway I see no reason to taper off that one. I personally enjoy extra serotonin I’m sure my family appreciates it too!

I would try the telephone or video chats that are offered now. It’s nice to talk to someone to process what happened and alleviate some guilt/shame that often seems to accompany this problem. Shop around, it works best if you find a therapist that you have good chemistry with. I did find the group postpartum therapy to be very helpful. Although most women didn’t share my same fears, I guess just knowing that they too were struggling helped me accept my struggles and have more hope.

I am still plus ten lbs since prior to having my second daughter. I had gained a lot while pregnant, only nursed until I fell ill, and was on meds. Exercise was helpful for stress relief, and if I took my baby in a jogging stroller, perfect nap time. Now I use a rainproof cover if I’m going to take her because of covid. And go on less crowded trails, and keep 6 ft away. There are also lots of exercise videos - but my kids want other videos so that tends to not to be my best option. I try to eat healthy. Focus on health and staying strong for you and your daughter. Happy first birthday to her! And stay strong mama, you got this!

[BarboraO in reply to coffeemom2]

Hi coffeemom2, thank you for replying and giving me hope. I strive to be more active and focus on my health more.

[Kat_at_APP Volunteer]

Hi BarboraO, thanks so much for sharing some of your story with us. It's fantastic to hear how helpful your chats with Ellie are - she is amazing, isn't she? It sounds like you're making fantastic progress, since your illness back in April 2019 - the one year anniversary of getting unwell is always quite a big milestone to pass, and of course your daughter's first birthday too! I hope you managed to celebrate her (and you!) and look back at all you have achieved and overcome together.

I too was starting to taper off my antipsychotics at around the 1 year post-discharge point. This was also around the time I was discharged fully from the perinatal mental health team, back over to primary care. It's not at all been a linear recovery - I've had periods where I've sadly relapsed and had to go back on some meds, and switch them around a bit too (I was on Olanzapine when I left the MBU, but later on when I had a bad relapse I was put on Quetiapine, and I seemed to get on better with that). If I can be reassuring at all, I would say that even with the relapses I never felt as sedated as I did when I was on the ward (no doubt I was on other meds there too, eg clozapine!). The antipsychotics I have been on at home have more been about helping me get a good night's sleep, and to stabilise my mood (racing thoughts mainly) from time to time. I agree they are very powerful drugs (the first time I took quetiapine again after a year or two being off it I was slurring my words and slumping my head over at the dinner table, less than 20 mins after taking just one low dose tablet!). I guess I just try and view them as useful tools to use at certain times. I'm currently doing well without meds, and managing my bipolar disorder myself.

The weight gain was an issue. I was probably about 2 to 4 stones heavier than I would've liked to be, around that time. My weight has always fluctuated quite a lot, so I've had periods since then of being a "healthy" weight and because I'm very tall I guess I can carry it off a bit. A couple of things that worked for me over the years were the "5:2 diet" and (more recently) doing a lot of home workout videos with Joe Wicks...

And then finally, in terms of online psychotherapy, we've been having some relationship therapy which started just a few weeks prior to lockdown. After a week or two's break, the centre offered us zoom call appointments, which we've taken up. They are fine! There's really not much difference to visiting the clinic in person, and it's a lot more convenient. So I would say why not give it a go, if you're offered it!

Best of luck and thanks again for reaching out to us on the forum,

Kat x

[BarboraO]

Ellie really is wonderful and conversations with her have been pivotal in my recovery since I was discharged from MBU.

Thank you for sharing about your psychotherapy. I am encouraged to contact my psychologist now.

Oh yes Joe Wicks! I really need to move more and stir the train of weight gain into weight loss!

Thank you for being there. I find the support I receive through APP just amazing and am very grateful.

[Pikorua Volunteer]

Hello BarboraO,

it is lovely to meet you here on this very special forum. I have had to have some head space and took a little break from social media, thus just read your story. Thank you so much for sharing.

Somehow I feel a bit of a connection with you as I look at the combination of the meds you have been administered. In fact I have not seen many I believe, who have been on traditional drugs such as Haloperidol and Risperidone.

I am convinced that level of PPP has a type of spectrum, even though not scientifically supported or shall we say I have not found any evidence. Nevertheless when reading about mum's experiences some people are more traumatised than others, but it certainly very difficult to quantify as our bodies, mind and soul react and respond differently throughout acute illness.

I was extremely unfortunate not to receive appropriate treatment in a psychiatric unit for quite some time, firstly because of being misdiagnosed and secondly unpreparedness and no knowledge of PPP by those health professionals in this establishment-where I became institutionalised! I was injected and kept in isolation, because my episodes were continuously. My partner and I suffered tremendously and it took years to recover. (PTS)

My partner literally saved my life and I was discharged after 39 days. Luckily I was allocated a very good Psychiatrist who also helped me to reduce the extreme cocktail of meds gradually together with the supervision and ongoing communication of GP, care coordinator and my partner. I have had for many years a care plan, because I continued to suffer with mental health issues, but I also refused to take any meds.-a personal choice as I wanted to be my true self for my family and they were in acceptance with my choice, despite my mood swings.

APP guided me to a professor, who helped my partner and I with a new diagnosis and thus,to come to terms with my chronical condition of BP1...and I am pleased to say that since I discovered APP at the end of 2015 my path was so much easier...

I always have had love around me in a happy home sanctuary. I have been given time to self-heal and learnt to live with my waves and triggers. You too will discover tools that suit you and your life style. I take CBD, no Lithium. This has been in my veins for a bit over a year and I must say finally I can have some restful nights. My insomnia and anxiety is part of my life cycle.

Wishing you the best of luck in your recovery, you will become stronger and stronger, discover and rediscover the beauty of life despite some challenges along the path, but this is OK, it is all about learning, giving and rejuvenating.

Bye for now.

x

[BarboraO in reply to Pikorua]

Wonderful to read your response. The pathway of recovery is such a unique journey for each one of us, yet there is a lot of similarities and twists and turns we all come through, I find it fascinating!

Reading of experiences of others on this forum is so healing.