Action on Postpartum Psychosis
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Olanzapine and medication reduction 18 months on from PP

Hi all

Just asking for some advice really. My daughter is 18 months old now and although I am still a bit up and down with my mood and anxiety I feel the need to start reducing medication. Various reasons really, I don't like the way they make me feel and also the weight gain is ridiculous. I'm just wanting advice on whether anyone has successfully come off Olanzapine, whether you experienced any side affects and whether anyone still suffers with the anxiety and depression 18 months on. I keep seeing threads about people coming off medication early on and feeling better after 3 months or so. I so want to move on from all this but still struggle? Is this normal?

Lots of questions there I know but just looking for guidance and support.

Thanks Beth x

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I don't have any experience of olanzepine but want to reassure you it is perfectly normal to still be struggling after 18 months. The depression that often hits after pp can be debilitating, plus the trauma you have been through, it's no wonder you're feeling anxious

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The depression is or should I say has been awful I just find it hard to move on from the whole experience of the MBU and ECT but hoping time is a healer. Thanks so much for your reply x

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Also congratulations on your pregnancy x

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Hi Beth - totally normal! Have you spoken to your GP about it yet? Are you on a low dose now? (I was on just 5mg Olanzapine when I eventually came off it). From memory I was off it about 18 months after the initial PP, but it wasn't totally straightforward. I had one or two relapses which led me back to medication (although I am now on Quetiapine which I prefer).

The weight gain is an absolute nightmare I agree!

Sorry I don't have much actual practical advice - but do go and express your concerns to your GP and hopefully you can take it from there?

Best of luck!

Kat x

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Thanks for your reply. I've only been off 2.5mg for a week but main side affects are nausea and headaches. I just hope it passes and am able to be partially medication free. I'm still on Venlafaxine but have reduced that also in a bid to shift some

Weight and feel more alive. Medication makes me feel dreadful. X

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Hi

I have been on olazapine twice now. I had PP in 2013 after birth of my daughter, not on olazapine. Then I relapsed a year on out of the blue and was put on olazapine, I found it really helped and I felt better a lot quicker than the first time.

I did pit on weight I know that also does not help how you feel. Don't rush coming off meds just take it one day at a time and see how you feel, you have done so well just make sore you are ready. I was reduced off it slowly I month at each reduction till I just havd harf a tablet every other day for a month then came off. I found getting back into A regular sleeping pattern the hardest but after about couple of weeks, It got better.

I lost a bit of weight once off meds. Then I fell pregnant with my son 2015 stayed off mads until a month before due date then I went back on olazapine. As a precaution and I havd no PP I came off it about 7 months after agen slowly and was fine.

I have now lost all my weight with running and swimming but go there in the end. You should lose the weight it will just take time.

I found talking to people about my experience helped me, I didn't tell them everything as it takes a long time to fully open up. I also sore a psychologist Which really helped she did some Electric pols treatment with me which is where you have electric pulses going from one hand to the other alternately as i speak about my experience this helped my brain to process my experience and helped with the flashbacks. At the time I didn't think it would really help but now, I see it has as I feel a lot better now about my experience. There is nothing I can do about that time it was out of my control. I try and use my experience as a positive, I have two lovely children and I'm not in a much better place.

Try and make time to do things that make you happy, I find walking with my daughter really helped. Or going on my bike.

Good luck in time you will feel better. Love Jenny x

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Thank you so much for your reply. I feel better mentally for being off Olanzapine but physically I feel dreadful. I have really bad night sweats, headaches and dizzy spells. Did you experience any of these? I've been on it 15 months or so. X

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Hi

No I did not get those side effects when coming off. But hopefully will get better. Talk to your docter about it.

Xxx

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I successfully came off 20mg olanzapine but moved on to flupenthixol instead. Flupenthixol for me doesn't have any of the side effects olanzapine had and I've managed to lose 2.5 stone whilst being on it. My daughter is 19 months and I'm still on medication. I didn't have many side effects when coming off olanzapine except insomnia, as it's a sedating medication and without it I found it difficult to sleep. I still suffer from depression and anxiety now, I think recovery is different for everyone but I don't think it's abnormal to still be struggling xx

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Many thanks for your reply. It's comforting to know people are in the same situation. I don't want to switch to another medication as I want to try and just stick with the antidepressants for now with a view of being medication free in 6-12 months time. I'm not bipolar or schizophrenic I have been diagnosed over the past 18 months with PPP, GAD, PPD. So my mental health problems were/are birth related which I hope in time will fade. X

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I am the same, I have been diagnosed with PP and PND but not bipolar or anything else except for my ongoing OCD. I'm also hoping to get medication free in the next year or so. Wishing you all the best with coming off the olanzapine, you're on a low dose now so you should be ok. Good luck xx

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Thanks for your reply. The side affects seem to be fading now after just over a week. Took cocodamol for the headaches and am starting to feel much better. I'm more alert than I have been in a long time and am finding driving and getting out and about much easier and my motivation is better. Long may it continue x

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That sounds great, I hope it does continue for you. I found driving a lot easier once I was off olanzapine too, I think it's because it's a sedating drug. Hopefully the side effects will continue to fade and things will continue to improve xx

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I stop taken that medication myself in December and I feel ok my child is 27 months old

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Thank you for your reply. Did you not have any withdrawal problems? How long were you on Olanzapine for? X

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I was on that tablet in the nite from March when I starting having postpartum psychosis in 2015 up until December 2016 no touch wood I be fine without it

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The postpartum psychosis came on me two weeks after my daughter was born I had to be section and then we went to mother and baby uniting in Bournemouth because they close the one in cardiff thank god I got good parents they stay down Bournemouth for me to have company and I was still saying there was people watching me Un until second week I was allowed home March 31st when I had the crisis team calling to my house but they only was with me for two weeks because they see a different in me from when I first went ill but I was lucky because I still live with my parents then but we moved out in January this year we about 11 miles from them but they come over once a week to see us

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Hi Beth , I had PP in Dec 2016 and I was on Olanzapine till March , in the end I felt like I was not feeling any better and I felt so so worn out on them I went to my GP who said to stop them . I just took sleeping tablets for a day or two and for three weeks I felt really poorly I was sick a lot and my appetite was gone the anxiety was horrific saying that I don't know if this was following the PP or coming off the olanzapine it's hard to know really .

I have not had anything apart from some mild diazpan for the anxiety it was very hard coming off them and I spent ages reading things where people had tried to come off them but couldn't and scared myself really but so far I have not needed to go back on them or anything else .

I really feel for you Beth have you had any councelling at all ? Try not to be too hard on yourself it takes along time to feel better and everyone's recovery is different x

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Thanks so much for your reply. I too have read lots of articles online about withdrawal and I'm scaring myself with it. It's been a week and so far I have headaches, stomach cramps, brain zaps, dizziness and excessive sweating. I hope I can cope with this as I really don't want to go back to being on it again. I want to feel bright and healthy and have energy. Something Olanzapine dulled. X

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Hi Beth ,

Another thing I forgot to mention is that when I came off the Olanzapine my GP sent me for some blood tests which showed my iron and vitamin D levels were low maybe get these checked too if you haven't all ready . Hope your still feeling okay xxx

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Thanks again for your reply. I read online that my iron may be low so I've started taking supplements. Magnesium, iron, B6 and a multivitamin. I'm actually feeling good at the moment. The withdraw seems to have faded and I'm feeling much more motivated. I'm tired at times though so am trying to get rest while I can. Just hope the good days continue x

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Hi bethanylj, to share my experience here too; when I came off Olanzapine, I did notice increased headaches and this was something I went to my GP about. He suggested normal painkillers (Ibuprofen etc) and told me that they would monitor me, which really helped to reassure me. Side-effects can be really tough and I was still feeling really tired and worn out by meds/ the after-effects of PP... I think I got through the worst of it by reassuring myself that it was temporary and progress from where I had been. Not sure if this is much help, but you can get through this, you have come so far and can do this! Take care, xx

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Thanks Hannah. So far so good x

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Hi Beth,

I successfully came off Olanzapine after six months. I too was feeling down about my weight gain, and my cholesterol levels had risen dramatically which was a huge concern, as I have always been fit and healthy. I wasn't on a very high dose to begin with (7.5mg) but reduced it to 5mg and experienced no side effects so stopped taking it altogether in November 2016. I struggled to sleep for the first week or so as I just couldn't switch off, and in hindsight, I was still quite anxious but this eased and as soon as I started to lose weight and feel healthier, I was so much happier and just seemed to bounce back. It sounds as if you are having positive days, so I hope these continue and you are successful too.

Jess x

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Many thanks for your reply Jess. I too am feeling anxious at the moment. I'm glad I have stopped taking it but anxious about becoming unwell again. I hope this fades as I'm constantly checking I feel ok and especially with these vivid dreams I keep having I feel a little unsettled. Were you like this? X

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I had lots of really vivid dreams when I was ill but didn't have any once I was back home. Although my husband was very supportive throughout, once I was 'better', he didn't like talking about it so I worried about the things I said and did during my illness, and this occurred many at night. Are you back at work at all? I found just generally keeping myself active helped with my mood and sleep after stopping my medication x

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I'm just constantly mentally checking, hard to explain really. I analyse the way I feel all the time because I'm so scared of becoming ill again. Also one of the girls I met on the ward has had a relapse and has just been sectioned which is also playing on my mind. That would be dreadful without my daughter. Saying that I was never sectioned during my PP. I'm not back at work yet but really want to be. I go to the gym and am ok when I'm busy, it's when I stop that I become anxious. Overthinking things I think :-( x

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Hi. I know this is an old post but I was just wondering if you have managed to stay off the olanzapine and how you are sleeping without it?

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Thank you for your reply. It’s a long story and everyone has there individual stories to tell. For me I reduced slowly but had terrible side affects all the same. Brain Zaps ⚡️ headaches, nausea etc. For me it was probably different mentally as I had so many diagnosis that I didn’t know what to believe, one doctor said I had PPP the other not, one said I was depressed and had personality disorder the next not. I took matters into my own hands which is probably not the way to go but I successfully weaned off it. It was horrible, I had sweats, migraines, sickness and brain Zappz but I though hey 👋 if the professionals think I’m ok why do I need to be on this crap. I mentioned it to my psychiatrist and he said ‘well Beth this is not an exact science no one knows whT is right??’ From that point on I made a choice to wean off all medication. I’m not saying for one minute everyone should do this. Far from it but for me mentally I need to do this on my own x x x not sure this has helped any x x Olanzapine reduction took a year, Venlafaxine 6 months and still on 75mg x x 💕

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Thanks for your reply. Did you suffer insomnia when stopping the olanzapine?

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Yes I did and still suffer with sleeping. It’s a nightmare as I can be and am exhausted but find it difficult to sleep x x

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Wow congratulations on coming off olanzapine. I have been off olanzapine for 18 weeks now (4 and a half months), with my doctors approval but like you, I have done most of the work on my own with little support from GP as they do not really know much about withdrawals or how to support us and I did not want to be put on another anti psychotic. It has been tough: depression, anxiety, hot and cold temp, psychotic feeling, fuzzy brain, headaches, feeling hung over, lethargic, restless, irritable, insomnia...

I am pretty much back to normal now except for my sleep it is still not 100% however I am not expecting that to become fully recovered anytime soon as the neurotransmitters and the dopamine in the brain have been effected and need time to heal. I am just glad that I have lost the weight I had gained and more, and I feel more alive now, but that does no mean I still don't have down days. I am off all prescription med's now, but take magnesium for sleep. I was on Olanzapine for nearly two years 10mg then 5mg and then 2.5mg for a year. I have been sectioned 3x in the last 12 years, my last hospitalisation was in Dec 2015 I was there for two weeks.

I go to the gym 4-5 times a week and try to stay active, I also try to eat healthy which has helped with withdrawals and sleep somewhat.

There is life after this drug but it is a long uphill journey. It is good to read others stories and talk to ppl who understand where you have been, where you are now and where you wish to be.

All the best,

B.

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Hello bethanylj

I hope you don't mind me replying on your thread after your supportive reply on the forum. I just wanted to say how sorry I am that you have had a rocky 20 months and you are suffering anxiety. It must be very difficult for you to cope with thoughts and feelings on your own. Have you been discharged from your care team?

As we have 'spoken' here before I think you might know that my PP was years ago. Like you I struggled with similar thoughts and needed medical support and counselling to help me so I'm worried you are trying to cope on your own. It took me two years or more to find my place again so please don't give up hope as the genie really will return and be stronger than ever :)

It's good to hear that you are feeling better than last year. I think after all you have been through with treatment you have a positive attitude to recovery and as you say, things will get better and better in years to come.

Take very good care of yourself ..... we are all here to lean on.

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Hello Bethanylj,

I just wanted to respond to you and pick up on Lilybeth latest message...about coping strategies;

It sounds as if your struggles were endless. I can relate to this. I was misdiagnosed with personality disorder by the head of the psychiatric hospital, when sectioned, knowing exactly that I just had given birth 2 weeks before to our wonderful son.

Professionals did not know how to cope with my illness, once it was diagnosed properly. A lot of drugs did not work and I suffered from endless episodes and not much sleep throughout 39 days. At the end the traditional, old antidepressants were the once which helped to gradually beat the hallucinations.

I might have mentioned to you my scenario before, but I thought I wanted to highlight this, because of my struggles with Insomnia.

I believe in my case it was brought on not only because of my traumatising experience in hospital and the "cocktail mixture of meds" (which I had to take in order to get better), but external stresses such as loosing my dad and mum in law.

My choice was the alternative route and no meds anymore (weaned off successfully after a bit more than one year), but it is not always simple...I still struggled with extreme Insomnia till the end of 2016, one of the reasons why my house is full of canvases everywhere...because I have had to paint at night or watch comedy programmes on the I-Player.

Therapy was of great importance and I attended 30 hours of support groups. The participants have had all different mental health issues, but were of great significance to me to share their experience of loss and grief. In addition it took me 5 weeks to actually sit together with the other group members, because of my extreme anxiety and fear of closed doors and windows.

I am slowly improving, - I summarized my experience for you, because I believe you have to be extremely kind to yourself and take things in moderation. We all react differently to external factors, but simultaneously have to learn to change our pace of life accordingly to our needs after PPP...it is quite a task in itself.

I meditate and in fact will be off to my Yoga today...journalising and focusing on my family is my purpose, but I also enjoy giving my time to other mums, who have been in a similar position like me after PPP.

Look after yourself,

x

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