I had Postpartum psychosis two years ago after having my Son. I've been on Olanzapine for the two years. I came off once by tapering but I think I went too quickly. I'm on 7.5mg and I went to 5mg for around 3 weeks then to 2.5mg for about 3 weeks and then off. Once off I couldn't sleep, I don't know if this is normal. I also got horrible intrusive thoughts which I should have mentioned before.
Can anyone who came off Olanzapine or another antipsychotic please share how they did it and what withdrawals they got and whether the withdrawals went after a little while.
Thank you, this group has been so helpful ❤️ x
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NMG1991
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Hi NMG1991, I am glad you find this group helpful, it is a good place to get many different views and experiences. We are all so unique in our chemistry that it is always difficult to say what worked for one person may not work for another.
When I weaned off olanzapine in 2019 - 2020 I had taken it for a bit more than a year. I am sorry I can't remember how long I stayed on each reduction, the best my memory can do is that it was around a month, but it could have been more than that easily. Once I came off it I had a couple of nights with some insomnia which resolved itself within a week. But what worked for me at that time may not work for others or even for me when I try to wean off it again (I currently take olanzapine for my bipolar).
I think it is a good idea to try to adjust as you go along and rely on past experience as an indicator. Try taking it slower this time and discuss the lack of sleep with your psychiatrist as they may have further recommendations, there may be an over the counter remedy that can help while you body adjusts to the changes? Things can become very anxiety inducing while we are changing medication so it tends to be useful to find a good time to do it, when there are no other stressors in life, for example.
Take really good care, good luck in your weaning journey
I completely understand and you're right - what works for one may not work for another.
That's great to hear the insomnia went after a week, that's the part that worried me as I was fearful of going back into a psychotic state through lack of sleep. My thinking is about 2months on each mg of Olanzapine - so 2 months on 5mg, 2 months on 2.5mg and 2 months on 1.25mg and then off - I hope this works as getting professional guidance has been quite difficult to come by.
May I please ask if you've always had bipolar or have been recently diagnosed? How did you know you had it if you don't mind answering these questions, completely understand if you would prefer not to. I'm just curious as since having PP I have been questioning my past behaviours and have questioned whether I could have bipolar - I have a lot of similarities when researching online.
Hi NMG1991, I am sorry the professional guidance has been quite difficult to come by, it's not always reassuring when you have to give a lot of input into your care. Your plan sounds like a very good one, and I hope things go well with the weaning.
I don't mind at all, it is a recent diagnosis for me and I was grateful and lucky that I was seen by a psychiatrist who knew my history of the past 4 years and thus felt confident in giving the diagnosis. I would suggest to go to the team following you or your GP if you are under their care and mention your concerns, the GP could then make a referral to the appropriate team and go from there.
The diagnosis of bipolar has been not always been easy to accept or understand, but it has helped me when talking to mental health professionals, so I do hope you are able to find an empathetic psychiatrist who will listen to you.
Thank you so much, I really hope tapering goes well too. This is something they don't discuss with you when first diagnosed, the fact coming off can sometimes be very difficult.
That's great you got the diagnosis and I'm sure that has given you some clarity going forward. It's great you found someone who truly listened and understood your worries and concerns.
I'm trying to get help through a mental health team and hopefully from there I can get some answers.
It is great to hear that you are under the mental health team. I really hope they can give you an answer to your questions and that clarity that you seek. We are here for anything you need, take very good care
I hope you're okay. I had PP in the summer of 2022 and was on olanzapine for a year. I was on 20mg then went down to 10mg as was on that for 6 months. I then went down to 7.5mg for a few months then 5mg for a few weeks then 2.5mg for a few weeks. While on the 2.5mg I started on quetiapine 100mg slow release. I've found that staying on an antipsychotic has really helped me and keeps me stable. This helped with my sleep too. I know how hard it can be to alter meds. If you want to dm me then please do. This time last year I was admitted to a mother and baby unit and it was an awfull time in my life but one year on with the right support and meds I feel so much better, getting there now! Thanks and take care xxxx
Hi, I was in the same hospital but in December 2021. They're wonderful there aren't they? Is it close to home for you? I was about an hour away with no traffic and had my partner was able to visit me and my Baby everyday. How did you find it there?
I still take Olanzapine 7.5mg two years later. I have tried to come off it once before but I wasn't able to sleep without it and I panicked thinking I would get ill again and went back on it but I'm trying again January to start tapering from 7.5mg to 5mg etc and hoping and praying I'm able to come off completely again whilst still being able to sleep. Do you still take medication and what are you on if you don't mind me asking? X
Yes they was brilliant, I was there for 2 months, I lived around 20 mins away so was really good.
I was on olanzapine for 17 months they recommended I stay on for 18months, I was on 2.5mg for around 4-5 months before tapering down to half of 2.5mg, then my sleep went bad, almost 4 months later and my sleep is like Russian roulette, i was taking zopliclone for some nights and then diazepam, now I have promethine for when I can’t sleep.
It look me 3 attempts to come off the olanzapine as I just couldn’t sleep and then went back on it. I recently had a review and the gave me mirtazpine for anxiety and depression. I haven’t started to take it yet, sometimes I do feel like going back on olanzapine.
However some people find it easier to come off than others, my sister had the same thing and came of her medication for over a year and she was doing brilliant. Whereas I am still struggling, I think there’s no rush and do what feels good for you.
So glad you also had a positive experience. I really felt at ease there.
It's awful when you can't sleep, and I don't know about you but when I couldn't sleep I just kept panicking that I'd become unwell again. It's good you have other medicines in place to help you sleep - getting a good night's sleep can really help you face the day.
I get the feeling of wanting to go back on it. The sleep on Olanzapine is so deep and you feel really good for it.
Is your sister sleeping ok after coming off it? So great you have someone to share your worries with given your Sister had the same illness.
Yes olanzapine was good to me, the only side effect I had was my eyes kept going on in supermarkets !! I liked the sleep on it but I feel like it made my personality a bit quiet.
Yes I was the same I kept thinking about going unwell if I didn’t sleep but it will settle and there are other things to help, I take magnesium, ashwaganda and inositol.
Hi there, I am currently trying to come of the antipsychotic Haloperidol. My usual nhs psychiatrist would not take me off and then agreed to but we could not find reductions small enough. I've had severe depression and insomnia on the drugs and lots of other unpleasant side effects. I am now seeing a private psychiatrist whose getting me to measure my tablets and then scrape it with a knife and then reduce by a gram every month. This is painstakingly slow but if I reduced the normal way eg from 4mg to 3.5 then 3 my insomnia got so bad that I couldn't sleep at all. I think it's always better to have a doctor try to wean you off but understand that not all doctors are amenable to this. I have been struck most of all by my extremely low mood on my medicines. I imagine that it will take me a year to wean off the meds-I have been on it a year. As others have said and yourself when I was on the drug before I was able to wean myself off quite easily but since this recent episode of being put back on meds in February no matter how I try I just can't get off the drugs. The insomnia and heavy sedation are very hard to tolerate. I have only managed to reduce by 2 grams in 3 months. By the way I have a diagnosis of Bipolar disorder. When coming off I have found the work of psychiatrist Dr joanna moncrieff to be extremely important especially the importance of weaning off slowly. Good luck and do please let us know how you do as you'll be helping alot of people including myself with your experiences.
HiI'm so sorry to hear you've had such unpleasant side affects on the medication, that can't have been easy for you to cope with.
I've not had insomnia on the drugs but have had bad depression to the point I started and quit a job within 7 months which is unlike me.
I sleep really well on Olanzapine, could you possibly start taking that to help with sleep - it gives a really nice deep sleep. Sleep is so, so important for you so it must be so hard having the insomnia. I hope this gets better for you.
I'll definitely update you as to how things go coming off. Please God it all goes ok.
I am going through every one of the side effects and withdrawl that you have described including being diagnosed as schizo affective disorder and also Bipolar disorder yet I have seen a private psychiatrist who tells me that that they believe that I have severe trauma and not the other two. But I have found it is the NHS diagnosis which holds most sway. I have asked the NHS psychiatrist for a referral to professor Ian Jones and this was met by an angry silence. When you reduced by tiny amounts was this under the direction of your new psychiatrist that you found? I have found that I need to go down by tiny amounts. I've gone down 2 grams in about 2 months which is a tiny amount. I think it may take me a year to come off. It has been a horrendous journey and so sorry to hear about all the health issues you've had. I've only been on the antipsychotics since February and am amazed by the side effects and how hard its been getting off the meds. With every reduction the insomnia gets exponentially worse. The meds also give me severe depression and a sense of hopelessness. I am greatly inspired and feel a bit hopeful hearing your story. I do hope that I manage to get off the drugs and feel better. That next Christmas I'll actually feel happy.
I'm genuinely so sorry to hear you are also struggling to get off antipsychotics. It's also really concerning to hear this is only from February, I didn't think the withdrawals would be bad for that length of time but that's showing my ignorance of not appreciating how powerful this drug really is.
I've been told to go straight from 7.5mg to 5mg and stay there for a few months and then down to 2.5mg and then off however I would then go to 1.25mg rather than straight off as I did before. I personally didn't find the insomnia kick in until I was completely off the medication, I think I slept ok up until then. But I did get horrible intrusive thoughts around 2wks after coming off completely which was really traumatic for me to deal with. Please note that this could have been my fault though as because I wasn't sleeping I panicked and thought I would get ill again so I stupidly took weed to send me to sleep which actually had the opposite affect on me - so I think this was my own fault. I would never make such a stupid decisions again
I really feel for you with the depression, I couldn't agree with you more as I've also found I have got really low mood with this medication. Do you find anything helps you? Taking walks, reading a favourite book, watching your favourite show?
Hi nothing makes me feel happy anymore. I noticed the depression after about 4 weeks after being put on the medication. I miss working but the way that the drugs affect my brain means that I can't get up early in the morning to do a commute. I find my brain functioning very slowly and I feel very sedated and sluggish indeed. I think that before prescribing these meds for life the doctors need to go through how you come off when you're ready to. There is not much information out there about the sometimes negative effects of antipsychotics and in the past I was able to take myself off them within 3 months of starting. On this occasion I bowed to pressure from the psychiatrist and My extended family to stay on them and I now regret this terribly. I haven't slept past 5am for nearly a year.
So sorry to hear that you're struggling coming off as well. Do let us know how you get on with each reduction. I'll also try to post as well.
Sorry to hear nothing makes you feel happy, that's so upsetting to hear so I can't imagine living like that. Genuinely so sad to hear that 😔.
I completely understand you not being able to work. I done it for 7months and have just handed in my notice, I just couldn't juggle everything. I also don't feel my brain is functioning like it used to, I used to be a quick thinker now I have to really concentrate on what I'm saying and I find holding a conversation sometimes so difficult and absolutely exhausting.
I couldn't agree more that doctors should discuss coming off these medications as the guidance just isn't there when you're ready. They should also list the side affects you can expect as I think it would be helpful to know these are 'normal'.
I'm surprised you can't sleep past 5am, that must be exhausting. I find on Olanzapine I sleep well, some days a little too well. Could you possibly try another antipsychotic to see if this would improve your sleep? Sleep is so so important for your overall physical and mental health.
(You said: I completely understand you not being able to work. I done it for 7months and have just handed in my notice, I just couldn't juggle everything. I also don't feel my brain is functioning like it used to, I used to be a quick thinker now I have to really concentrate on what I'm saying and I find holding a conversation sometimes so difficult and absolutely exhausting.
I couldn't agree more that doctors should discuss coming off these medications as the guidance just isn't there when you're ready. They should also list the side affects you can expect as I think it would be helpful to know these are 'normal'.)
I agree with all you've said above and you describe the feeling of a slow functioning brain so well. I also find it hard to talk. I get exhausted from thinking, trying to sleep, trying to talk, trying to shower and cook and do the basics of life. I'm sorry too that you've had to give in your notice in your job. How long have you been on the meds for?
It is very difficult. I have to say though that this medication did save me after getting diagnosed with postpartum psychosis so I definitely don't think it's a bad medication but it definitely does come with it's challenges being on it. I completely empathise with you not being able to do the basics of life - I struggle too. My Son keeps me going ❤️.
I've been on them two years (since I was first diagnosed with PP). How long have you been on your medication? X
Sorry, I thought I responded to you the other day but I must not have pressed send. So sorry.
I've had the same my whole life. I have thought I may have bipolar but I've never been officially diagnosed and wouldn't know how to go about getting diagnosed. How did you feel after you were told? Was it a weight off your shoulders?
So sorry to hear you were wrongly diagnosed. 20 years on medication is a very long time. I completely understand people not really understanding PP, it's not something I had heard of prior to being diagnosed. There really needs to be more awareness around this as it's such a serious illness.
The side affects you've had are serious! I'm so sorry that being on this medication has affected your health so much especially with all the side affects on your physical health. The weight gain is tough, I've put on 2.5 stone in 2 years and have to really watch what I eat now to try and avoid any further weight gain. Getting breast cancer must have been so scary, I can't even begin to imagine the affects that alone would have on your mental health - I'm so sorry you went through that on top of everything else.
The withdrawals are tough especially for me the not sleeping - we need sleep! 😣. I went back on after suffering with insomnia and intrusive thoughts (I could have caused this part myself as I stupidly took weed to try and send me off to sleep and it had the complete opposite affect).
Losing 10 pounds is absolutely amazing! You must have been over the moon with that weight loss.
I got the racing thoughts too, they're awful. I only had it for a short time before giving in and going back on the medication. How did you cope with these side affects for 6months. That's a really scary thought for me to have to deal with the side affects for so long. Did you also get intrusive thoughts, those I found the hardest to deal with.
So happy to hear you stuck it out and got off the medication. That must have been so hard but that also must have been an incredible moment when the clouds lifted on the side affects and you were back to you ❤️.
Thank you for sharing the mood stabiliser and antidepressant you take - I nearly missed that in your second post - thank you. I was put on Sertraline but I really didn't like the way it made me feel and it made me very hungry which I hated and my weight was beginning to increase further.
I can't believe you've lost 50 pounds since coming off, that is absolutely incredible! That is a seriously amazing weight loss journey.
'It’s like I died and then came back to life' this is such a huge statement. I'm so happy to hear this ❤️.
I will ask my GP or mental health team about something to combat the thoughts and sleeplessness - thank you for the recommendation x
Hi NMG1991, I had PP in the spring of this year 2023. I was put on 15 mg of Olazapine. I am a person who hates medication - I don't even take paracetamol for a headache - so being on an antipsychotic was a big deal to me. I hated it. I had the medication reduced to 12.5 after being discharged but I only took 10 mg (so I went from 15 to 10 mg). I stayed on 10 for some time but just hated taking the medication so I decided to go off it without the approval or knowledge of my psychiatrist. I knew they would not approve of it as the guidelines they follow recommend a longer period, but I felt stable and ready to recover my self. I thought I would reduce it by 2.5mg every one or two weeks, but became impatient and went very quickly. I probably took 7.5 for a couple of days, then 5 for a couple more days, then 2.5 and then nothing. I had no withdrawal symptoms, and every time I reduced it I noticed no changes, which is why I kept reducing it. I was probably on the medication for a total of 3 months.
I've been medication free for 4 months and I am glad I quit when I did as that allowed me to recover faster. If it were up to my psychiatrist I would still be on 7.5 mg of olanzapine. I think the reason I didn't suffer from any withdrawal is because I was not on it long enough. Sorry my experience cannot help you but I still thought it might be worth sharing.
Good luck with the tapering off. I would suggest you listen to your body and follow it instead of ascribing to a strict schedule.
Wow! Your story has absolutely amazed me. I'm so happy to hear you were successful at coming off this medication - that really gives me hope. I cannot believe you had no withdrawals at all - I've heard so many people have and it's reassuring to know you didn't.
May I ask if you got any insomnia at all? that was the biggest thing for me when I first came off before going back on. How long were you on it from start to finish?
Sorry to hear you had PP, I know first hand how scary an experience that is. What symptoms did you have that led you to the diagnosis?
I was on the medication for 3 months or just under. I had no insomnia luckily, although I have always been a good sleeper (except during the PP episode). It was easy to diagnose me at the moment they did as I was experiencing full blown psychosis. I had delusions, paranoia, hallucinations, confusion, and I was completely unable to sleep. Unfortunately they missed an opportunity to diagnose me earlier than they did even though I had already had a psychotic episode, but they pinned it on sleep deprivation. I was still lucid then, but ended up sectioned a week or two later when things got really bad..
Well, good luck with getting off the medication and with planning a second pregnancy. I'm already thinking about it and I'm slightly terrified. But I hope our previous experience helps in catching the signs early if we were to get unwell again, and hopefully avoid getting sectioned!
So sorry they missed an opportunity to diagnose you, I think there just isn't enough awareness around PP. Also sorry to hear you had to be sectioned. I admitted myself to hospital in the end as the care worker I seen told me and my family that if I don't admit myself it will end up with me sectioned as I was so unwell. I can't even begin to imagine how scary it would have been for you being sectioned.
I think for us it will be different the second time around as we'll have support from the beginning of our pregnancy and will have people who know about PP keeping an eye on our behaviours and get help if needed.
Hello Survivedwithcolour, Thank you for your response on this thread. I am one of the Peer Support Team at the UK Charity Action on Postpartum Psychosis.
I saw that you're in America, however I thought I would just post a link to the charities research page on our website which might well be of interest to you and others on this thread. It includes information on current and past research studies too: app-network.org/research-in...
Thank you, I will definitely check this out! I’m in a place now where I’m trying to follow this as far as I can, in hopes that my experience will help others. I do know that your health system is different in the U.K., so there will be variations in processes and treatments, but I also know that my father worked internationally on these committees, so much of the basic information on the disorder is shared worldwide. Thanks again!
Wow, a Quick Look at this and I’m seeing so much great interesting information. This is far more than anything I’ve found here in the US. Healthcare being heavily related to profits here does make a difference. With PP being so rare, I wonder if research facilities here don’t want to concentrate their funds on it - I don’t know, that’s just speculation. I’m definitely going to read through this and am looking to get more involved where I can. Thanks for posting that!
WOW just WOW! Everything you've written is just so interesting! Having a tea and a chat would be great! I think I could sit and talk to you all day without losing interest.
I met people with PP in hospital and that's the only place. When I talk to people outside of that they have no clue what I'm going on about when I say I suffered with PP. I have however had two friends who have had psychosis outside of having a baby which is also very rare. I'm fortunate to have people who I can talk to about it but I'm unsure at the moment whether it helps or just reminds me of a really dark and scary time.
But you're right it's so rare and so many professionals don't understand it fully so it's hard to get the help you need at the beginning and throughout. I've found it particularly hard to get help coming off the tablets. I have a meeting in January with a mental health team who I hope can guide me through the process as the withdrawals the first time I tried to get off were really hard to cope with - I got insomnia, intrusive thoughts and some paranoia which I forgot to mention previously.
I've not heard of DSM 2 or DSM 3 but I will do some research. Can I ask if your Father given his background was able to help with your care at the beginning?
I'm so surprised you got diagnosed with a different illness especially given this all happened after you had a Baby - thank goodness the treatment you got was still able to help you through that difficult time. It must have been awful.
So happy to hear you're off the antipsychotics now and able to function fully without them. You're right that I have a young child to look after and it makes things a little more challenging as I have to be well for him so coming off is tough but I need to try with the right supervision and under the right care.
Thank you so much for your response, it's been a really eye opening read.
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