Getting it back together

Four years ago I was hospitalized for postpartum psychosis with my third child. I had ECT and maintained things for three years. Unfortunately, I was unable to go off medication successfully. I thought I was doing fine, but after much stress I was hospitalized again. Now I'm focusing on taking my medications, being kind to myself and others.

I'm feeling very glossed over and I don't know if it's the medication or just me adjusting to different lifestyle. My confidence is low, my ability to function wavers. I'm struggling, but doing ok. I'm hoping to be able to open up more especially to the people who understand.

If anyone has words of support, I'd appreciate them.

Gina139693

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Hi Gina 139693

Welcome to the form, really glad you’ve reached out, it sounds like you’ve been doing so well maintaining things for three years. I’m very sorry you were hospitalised again recently. Medication can be so hard to come off and I know when I’ve tried in the past (before having my daughter) i’ve been hospitalised again. It’s a really really difficult process. But medication really does help, I have taken Olanzapine for many years, and have tried at different times to come off it, after going back up a dose I have experienced the symptoms you describe, feeling ‘glossed over’ (a really good way of putting it!) and low confidence and kind of ‘wavey’. It takes time to adjust back to taking medication but you will and please allow your confidence to return. Your body will need time to adjust from the changes in medication, but your body and your mind will catch up. Focusing on taking medication and being kind to yourself sounds fantastic, you should be very proud that despite fluctuating medication you are reaching out and knowing to be kind to yourself. I’ve found that since the medication fluctuations, having been on a steady dose for a while I feel so much more myself. I did little things at first, changes of medication slow everything down. Thinking of you and sending a hug, Jen xx

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Your kindness is appreciated. It was so sweet to read. I'll keep in mind how changes in medication affect me. I'm trying to get it all together.

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Hi Jen. Can I ask how long you have been on the Olanzapine for, what dose and if you have any long term side effects. Since my illness I have been unable to wean off the olanzapine even though I would love too!

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Hi Janellec

I’ve actually been on Olanzapine since 2003 after having my first psychotic episode after getting ill while a newly qualified teacher. I didn’t have my daughter Josie until 10 years later, in 2013. At first I weaned myself down to 2.5 mg for many years, but after 2 more episodes in 2011 I went up to 7.5. I then had Josie and had ppp when she was 9 months and went up to 15mg for a year and have now managed to step it down to 10mg. I’ve tried going lower, last year, but have found it really hard. I’m stable on 10mg and feel very myself and am a bit reticent to try stepping it down again, but know i’ll Give it a try when my work’s a bit more settled.

Everyone’s different and will respond to medication in very different ways, I know the last time I tried to lower the dose I got very paranoid and anxious. Side effects are harder to put my finger on, i think it’s a process taking medication just as coming off it is! I definitely have tricky mornings due to the sedative effect and can have difficult dreams. I’ve found work with a psychologist incredibly helpful for working through anxieties and paranoia and now feel I have tools to help me either stay on this dose, or that will hopefully stand me in good stead for if I try to step it down again.

As I say, everyone’s different and my situation’s because i’ve Had quite a few psychotic episodes before.

Please take the advice of your doctor and any psychiatrist or psychologist you might be under as they could advise you on the best thing to do given your situation. A GP recently told me what I could try is the soluble Olanzapine that’s available, then taking up the equivalent of 9mgs in a syringe of the liquid to take orally, taking this and using this way to very, very, very gradually step down. I need to talk this over with my psychiatrist to see if they’d recommend doing it.

Sorry for the very, very long message! Definitely talk to your GP and psychologist about it as hopefully they will have helpful info. It’s can be a gradual process, but through following their guidance i’m feeling so so much better, whether on medication or not.

Hope this might be in some way helpful

Jen x

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Thanks very much for your reply Jen. It is great to hear from someone who has been on this long term. Do you mind me asking if you have had any side effects like diabeties risk or movement disorders from it?

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Hi Janellec

I have regular checks for diabetes, I think once a year, and luckily, so far, that's been fine. I need to speak to my psychiatrist about what's best for the future re. this. I haven't had movement disorders from it at present.

Definitely speak to your GP and any psychiatrist you're under, as this is just my experience and medication always affects people in very different ways. They would be able to talk to you about your case and situation and see what would be best for you.

Sending you very best wishes for it, I really hope you're able to see the doctor you're under soon and have a really frank conversation about it, and find an approach that would be best for you.

Jen x

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Hi Gina - can't add too much to Jen's wise words above, but wanted to say how well you are doing. I also have a four year old, but he's my only child - i can't imagine what it must be like recovering from PP with 3 little ones to contend with! Focusing on your recovery needs is such a good idea, and being kind to yourself is a great way to start.

Have you heard about WRAP? It's a tool that you can use to help plan your own recovery needs, and be proactive about protecting yourself. It stands for Wellness Recovery Action Planning and if you Google it you'll find lots of helpful work sheets to help guide you through it.

Many best wishes

Kat x

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Hi Kat! I just looked up WRAP and it looks really good. Thanks for sharing that information. I'm going to talk with my psychologist and psychiatrist about it. I'm hoping that they are familiar with it and maybe they can guide me through it. I'm looking for returning to my former self. I'm tired of doubting and negative thinking. Having 3 kids and not feeling like myself is no fun. My husband has been very supportive. I don't know what I'd do without his support.

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That's great Gina - let us know how you get on! It's brilliant you have a supportive husband (I have one of those at home, and I couldn't do it without him!)

Best of luck, Kx

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Hello Gina,

thank you for sharing your experience with the forum and welcome! You have had already some great responses from other women.

You are doing exceptionally well, considering that you have three children, but also luckily a supportive husband. I am pleased you found this forum, because it is good to talk and in a way helps you to journalise and exchange experiences with mums who have struggled with PPP.

I have to emphasise that once professionals were able to diagnose my illness properly that medications were essential in order to fight PPP. I was sectioned and the Psychiatric unit was not a positive experience.

The after care was much better, - recovery has been a long path. It is always important to work together with professionals, who try to help you to get back onto your feet. My first year was a tough experience, but my partner helped me back on track. He was my full time carer. I managed to wean off medication with the help of a very good Psychiatrist.

Take good care of yourself,

thinking of you,

x

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I'm struggling right now. My confidence is very low. I'm worried and anxious much of the time. Nothing seems to be going well. I need to figure something out. I have appointments today with my psychologist and psychiatrist. Hopefully they will direct me.

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Hi Gina,

Sorry to hear you're struggling today. How long have you been back on medication for? Medication can certainly knock you around so I hope things settle down in that respect soon.

Being hospitalised again must have been a terrible blow - it's good to hear you have good support. You will feel better again and get your confidence back, being kind to yourself is really important to focus on.

I hope your appointments go well today, tell them exactly how you're feeling and hopefully they will have some helpful advice. Let us know how you get on,

Best wishes, J x

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I spoke with both of them and told them how I'm feeling. It felt good afterwards and I woke up feeling pretty good. Now as the day continues I feel less sure of myself and less motivated. I'm feeling unsteady. I'm trying to be kind to myself. Thanks for letting me reach out. I feel less isolated because of the forum.

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Hi Gina,

I'm so glad the forum is helping you feel less isolated - I found reading others' experiences really helpful and comforting when I was recovering, and there's nothing quite like talking to others who really understand.

I'm glad your appointments helped. I wonder if it would help at all to write down somewhere some of what they said while it's fresh so you can go back and remind yourself when you're feeling unsure? I remember how anxious and unsure I felt when I was unwell - my husband would reassure me and I'd feel better until the anxiety and doubt set in again and he'd have to start over.

You won't always feel this way. Use all the support available to you, including us, and look after yourself.

Thinking of you x

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I've been back on medication since March. I was off medication for 4 and 1/2 months prior to being hospitalized for the second time.

Right now I'm trembling and only got 5 hours of sleep. My GP says that sleep is key for me so I'm a little worried.

I'm hoping to have an ok day.

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Hi Gina, thanks for posting and I’m so sorry you’ve been having difficulties with sleep, really hope you’ve managed to get some. Thinking of you and really hope today has been ok X

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I was able to sleep last night. I'm still struggling during the day. I'm having a hard time relaxing during the day.

Thank you for thinking about me.

Hope you had a good day.

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Hi Gina,

So sorry to hear you’re struggling in the day. I’m really glad though that you were able to sleep at night. I wondered if, as J-B-55 mentioned, would it help to write down what your psychologist and psychiatrist said? I know i’ve found it really helpful to write down positive things people have said to me and look at them when struggling. I don’t know if it’ll help but one thing I’ve found of use was someone said to me try keeping two books, keep one of the good things that happen in the day and in the other write down any difficulties you’re having / difficult thoughts. She said don’t look back on the book of difficult stuff, but do look back on the good one. I get a lot from writing and have found it really helpful. This may not chime with you at all, but just wondered if it might help. The good things could be ‘had a nice cup of tea.’ ‘Made my bed’.

You’re going through so much with three children. Please be very very kind to yourself. This is a really horrible illness and changing medication doses is really hard but you really will come through it and will definitely, definitely not always feel like this. As J-B-55 mentioned please use all the support available to you, including here. You will have a time when you feel different. Sending every best wish to you x

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Hi Gina how did your day go? I think your GP is right to emphasise the importance of sleep - but hopefully not to the extent you then get anxious about the sleep itself, if that makes sense?!

Sometimes having a busy day, with a bit of time spent outdoors in fresh air, and then a relaxing wind-down come evening, can help establish a good night's sleep?

Best wishes

Kat x

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I'm anxious about my sleep. I'm pretty sure that I'm having all the side effects of the Clonazepam. I don't want to catastrophize. I'm hanging in there. I tried spending some time outside and winding down at night. It's getting really hard for me to wind down/relax.

Thanks for thinking of me.

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I really feel for you Gina. Clonazepam is one of the strongest drugs out there (very very useful in treating Psychosis - but lots of side effects!)... you are doing so amazingly well to be on that and doing all that you do besides. Perhaps at this stage it's about being super kind to yourself, enlisting as much practical help and support as you can, and giving it a few more days/weeks. But do tell your doctors how you are feeling - even by keeping a mood / symptom / side effect journal?

All my best wishes! Kx

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I didn't sleep two nights ago. Sleep is a priority for me according to my GP. Even though it was Sunday, I contacted my psychiatrist and let her know my mood and symptoms. I was able to sleep last night, but I'm still a little out of it. I'm praying and reaching out to people.

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Hello Gina,

thank you for responding. How are you today?

Hope you have had a positive experience with Psychologist and Psychiatrist.

Wishing you well, thinking of you.

x

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Hi Gina

Thanks for your post and i’m so sorry to hear you’re struggling. Really hope your appointments with your psychologist and psychiatrist have gone well and been helpful.

Very best wishes to you, thinking of you,

Jen x

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Hello Gina

I've noticed you have replied to the "Motivation" post and thought I would reply under your own thread so that other mums can support you. I'm sorry to hear you feel lost and your psychiatrist doesn't really understand. During recovery from PP I found it very difficult to motivate myself, even getting out of bed in the morning was a huge hurdle! I understand about finding it hard to go out of the house. Is it possible you could ask a friend to meet for coffee so that you will be able to focus on going out as a 'treat'?

I had PP twice and a few courses of ECT during recovery. It must be a hard decision for you to make. When I had ECT my husband consented on my behalf as I was so ill at the time. Perhaps if you don't think your psychiatrist understands, the APP Second Opinion Service might be helpful? Dr Ian Jones, based at Cardiff University, will be able to assist and give advice regarding diagnosis and management, the link being app-network.org/what-is-pp/.... You can be referred by your Psychiatrist and there is no charge for this service (either to you or referring NHS Trust). I met Dr Jones and his team some years ago and he was very kind and reassuring.

It's not easy to imagine but you really will get back to your old self and eventually feel enriched by all you have been through.

Take very good care of yourself ..... we are all here for you.

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Thanks for responding. I appreciate you putting it under my thread. I'm not very good at forum posts, but I better speak out here because I think it's getting to be a lot for my husband. I am not the person I once was.

I'll ask my psychiatrist about the referral. It can't hurt to get a second opinion. Thank you for suggesting it.

Going out and about agitates me right now. I successfully went to a store and bought something we needed for the home, but it was a difficult process.

I've been reaching out to some moms in hopes of getting coffee or something, but it has not worked out.

I'm still trying to keep it all together and just not make anyone else miserable.

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Hello Gina

I think you're amazing coping with everything as well as three treasured children and your husband. It's a lot for family to understand and it's good that the forum is an outlet for you as we have all 'been there'.

At least you are challenging yourself to go out even though it's difficult. I hope some moms will take you up on your offer of joining you for coffee.

It's very hard to keep a lid on things. Try to remember that it's not your fault that others might be miserable. You are coping with so much and trying to make the right decision for yourself and family. I hope a second opinion might put your mind at rest and reassure you that with good medical care you will feel better eventually.

We are all here to listen .......

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Hello Gina,

some very encouraging posts by mums.

Motivation level can be rather difficult. I struggle with mood swings. Nevertheless, I feel so much better since I have found this forum and knowing that our challenges in life can be shared with like minded mums. Journalising and being informed by others has changed my out-look of life. It is part of therapy, but also human nature. The urge of not wanting to feel lonely or to be alone, but communicating about your worries with love and kindness & somebody who has the skills of actually listening.

I am sometimes concerned about the way I have changed after the illness and occasionally feel I am putting a strain on the once I love most. However, I only can make changes, if I am willing to do so...(my partner's words :-) stepping stones and learning to live with challenges and confronting them from time to time, but still remembering to be kind to yourself is quite a skill in itself. Thus, it is great to realise-hey I need a bit more help and advise here...what is my next sign post and/or how can I reach my next target without getting too frustrated in reaching the goal at a much slower pace.

You have done so well in trying to reach out. I am probably at a different stage of recovery than you are, but also interested in a second opinion. Everything you do has got a purpose. Looking after yourself in order to find your strengths in role positioning such as being a mum, a parent, a partner, a friend, a learner and lots more...Life can be beautiful, but is not always that easy!

Thinking of you,

x

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Hi Gina,

Thanks for your updates and I’m sorry to hear that things are hard for you at the moment. I too wondered how my mood affected others when recovering from PP, it is such a hard balance as really it is about putting yourself first too and making sure you are well supported. I too had ECT and whilst a scary proposition in many ways I think it really helped me. I know you wrote in the other post that you were considering this again and hope you have good support around you to help with this decision too.

I’m glad you feel you can “chat” here on the forum and I hope the link to Prof Ian Jones is also something that is useful to you and your care team. I also wanted to let you know that APP offers one to one messaging, through the HealthUnlocked website if that was something you would be interested in, there is more info here: app-network.org/peer-support/

Wishing you all the best and please keep writing to us here too if that is useful to you. Xx

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I've decided to go ahead with the ECT. My doctors recommend it. It worked for me in the past. My husband believes it can help me.

I'm still nervous and worried about the procedure. My anxiety and depression aren't getting better though.

My life needs this change. I hope it will be for the best.

Thanks for all your words of encouragement. I'm going to continue needing them through this process.

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Hello Gina

Good to hear from you. ECT made such a difference in my recovery and I also had this treatment in times of crisis as an outpatient. As the sessions went on and I became more aware of the procedure I was nervous but it was the right treatment for me and was a real turning point. Hopefully it will help with your anxiety and depression which must be very draining for you.

I didn't realise you are in the US so unfortunately won't be able to access the second opinion service as it's for mums and families in the UK. I'm sorry I misled you. I hope your GP and care team will be able to support and reassure you about your decision to have ECT. I'm sure your husband is concerned for you but hopeful that it helped in the past.

We are all here to talk so please keep in touch if it helps you. Sending a virtual hug across the pond :) Take good care of yourself. xx

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Hello Gina

I hope you are well after deciding to go ahead with ECT.

We are all thinking of you and sending a virtual hug :) Take good care of yourself. xx

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I'm still trying to settle down into ECT treatments. I'm anxious and worried.

My hope is that ECT helped me in the past and will help me again.

Thanks for the virtual hug.

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Hi Gina

Thanks for taking the time to reply. It's not easy to settle down into ECT and understandable you are anxious and worried. Recently I have found mindfulness music to be relaxing after a stressful day, so I wonder if this would help you? As I mentioned earlier, as my ECT sessions progressed I was more aware and nervous of what was to come but it really brought me back to reality. I really hope it will help you as it has in the past.

Take very good care of yourself .... we are all here to support you along the way. xx

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Dear Gina,

I am so pleased that you can communicate with some of the mums, who have had ECT experience.

Yes, anxiety and lows can be such an obstacle. However, trying out a tool within the toolkit is much more positive, because you will know in the long run what benefits you will gain from it.

Making a decision and pursuing that goal, means moving on and trying to find new avenues to self-help. I am proud of you!

Take good care and as Lilybeth said, do keep in touch. I find journalising and communicating with people on the forum very helpful, too.

Sending you kind wishes from the UK.

x

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Hi Gina

I hope you have been able to settle into your ECT treatment. Hopefully in time your anxiety will be manageable as you feel the benefit.

Thinking of you ...... take care.

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I'm not feeling that great. ECT treatment is halfway through. My husband reminds me that it helped me in the past and can help in the future.

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Hi Gina

So sorry you're not feeling great. ECT isn't an easy option but I hope that it will help you as it has in the past. I had regular sessions during my first recovery and then again six years later and it was really helpful. I'm glad your husband is being supportive and reassuring.

You're going through so much right now so please take good care of yourself. We are all with you.

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Dear Gina

I'm so sorry you're struggling, you can and will come through this. How are you doing at the moment?

I hope that you have some other professional support too, are you able to access any therapy?

Thinking of you, we are here for you whenever you want to write

Ellie

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Dear Gina - There are other aspects to post natal psychosis - the sleep problem you mention

in addition to paranoia can be caused by sleep deprivation. Very often it is linked to thyroid

problems, when the thyroid goes hyperactive - you can get temporary bipolar symptoms.

Post natal thyroiditis runs in my family. Post natal psychosis an be due other medial causes

such as kidney and urinary tract infections which might occur later on in your life.

Vitamin B12 deficiency is also a cause of mental instability with mood swings and a spaced out feeling. If you look on Progressive Health web site or Global healing website you might find

interesting information on mental health and vitamin B12 deficiency. If you look at the white

half moons on your fingers you can see if you have a deficiency. If they are missing on any finger or thumb, this can show a depletion. A course of sleeping pills might help as sleep deprivation is a vicious cycle. Other medical conditions which can destabilise your mood are diabetes, pneumonia and other trauma or infections.

Katerina Dalton's research in the seventies explained that progesterone imbalance can

cause aggressive behaviour at certain times of the month, or mood swing lack of confidence. After birth as you know your hormones are all over the place. Then as time goes on there's the pre menopause and then the menopause- women are so lucky!

Hope you are feeling better. I am 70 now and I look back with regret at the non holistic approach to post natal psychosis - so confidence is zapped and your self esteem goes rock bottom.

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I am now finished with ECT and focusing on my recovery. My psychiatrist is helping me manage meds and my new therapist is allowing me to open up about my experiences. Additionally, I've been going to DBSA meetings and communicating with very supportive individuals. I'm willing to get out of bed, drive kids to school, exercise, take some time for myself and share evenings with my children. Unfortunately, I still have some anxiety/panic but I'm working through it. This forum really helped me when I was incredibly struggling. Thank you all. I'm not completely recovered, but I am on a good path.

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Hi Gina

It’s good to hear from you and to hear you’re feeling a bit better and as you say, working on recovering. Your goals for yourself sound really good and it’s amazing if you’re managing to do those things. I’m sure you’ll continue to get better and better.

Take care

Ellie

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I'm encouraged by the amazing women who share out on this site. This has been a welcomed resource in my life. Thank you for your encouragement.

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Look after yourself, Gina!

Wishing you well. Always happy to listen and exchange experiences. Hope your anxiety will reduce...you are doing exceptionally well with your daily routine.

All in stepping stones.

x

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