Please give me success stories for coming off Olanzapine? I'm hearing so many conflicting stories especially around not being able to sleep properly. Thank you ❤️ x
Success stories coming off Olanzapine - Action on Postpar...
Success stories coming off Olanzapine
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NMG1991
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x_AmyVolunteer
Hi NMG1991,
I hope you’re doing OK. It can be really daunting to stop a medication so my advice would be to discuss a “tapering off” plan with your doctor/psychiatrist.
I have just responded to another lady on the forum with my experience, which was a positive one. I was lucky to not experience any side effects while tapering off olanzapine, under the supervision of my MH team. I decreased my dose every 2 weeks until I was taking as little as 1mg, and then managed to stop the medication completely. Of course, every person’s experiences will be different so it’s important to keep in touch with your health professionals so that they can support you with the process.
I wish you all the best with this and please keep in touch.
Best wishes,
Amy x
Hi Amy,
Thank you so much for your reply.
That's great to hear you experienced no side affects. My mental health team have suggested I go from 7.5mg to 5mg to 2.5mg then off. I'm currently at 5mg now. I'm a bit worried to jump off at 2.5mg as to me that's still quite a high dose considering the highest is 20mg.
X
You’re welcome! I completely understand as I felt the same way as you, especially with it being such a powerful medication I was afraid of taking that “final leap” so to speak. I’d definitely suggest having a conversation with your MH team so they know how you feel, they may be able to check in with you a bit more regularly if you’re particularly anxious. But you can absolutely do this, we are here for you too so please keep in touch. X
So nice to hear you also had reservations about coming off. It is so hard taking that final leap. When I was off before I was absolutely fine in myself but I just wasn't able to get to sleep (I must have slept a bit but it didn't feel like I was sleeping at all). That scared me as I know not sleeping can cause you to become unwell.
I'll definitely speak to my mental health team.
Thank you so much - this group has been amazing and so supportive.
X
• in reply toNMG1991
I did this. I tapered off from 10mg, to 7.5mg, 5mg, 2.5mg then off completely. Take as long as you need and keep reviewing it ever 2 weeks. I came off within 2 weeks of each taper as I have never been on medication before and it was useful initially. Just have to be careful symptoms don’t come back, so take it slow! 💚
NMG1991• in reply to
Thank you so much for your reply. Was your sleep affected for a while or did you manage to sleep ok? X
• in reply toNMG1991
My sleep was unaffected when coming off as I tapered. I reviewed each time medication was reduced with my mental health nurse and doctor every 2 weeks. We all made sure tapering was going ok and no relapse symptoms. I didn't like being on Olanzipine. It was useful for the intial episode of PP, but after about 2 weeks, it made me feel to lathargic in the day, want to eat all the time and hard to wake at night for baby! I think what worked for me when it came to achieving some decent sleep was being active in the day, getting some exercise that I enjoyed and things like baths, yoga and less screentime before bed. Hope that helps ☺️ x
NMG1991• in reply to
That's absolutely incredible that sleep wasn't affected, so happy to hear this as we need our sleep. I agree, for me it was also amazing for PP as being unwell was so awful - a living nightmare. The eating I can completely relate to as well - I've put on 2.5 stone in two years, fortunately now my weight seems to stay the same but I've also learnt to control my eating for the most part. I'll take all your points for good sleep on board. Thank you for replying, your response has really put my mind at ease x
• in reply toNMG1991
Glad to be useful! It’s great to have this forum to share experiences. Xx
I did not take Olanzapine myself so cannot speak to that medication specifically but I have taken a number of others over the years, and have had withdrawal effects from every single one. Trouble sleeping is often one of these issues. I am STILL struggling with that to tell you the truth and I'm not always sure what the exact cause is. In regards to coming off medication, working with your psychiatrist is almost always a good policy, or even your pharmacist as far as whether or not you can cut the medication and how you can taper it. Some pills cannot be cut if they're extended release. Make sure you know that. When I finally tapered off the last of my Lurasidone, I was indeed taking a tablet, and I cut it smaller and smaller kind of on a weekly basis or as withdrawal symptoms allowed. Then I went to every other day, then every third day, then finally off. I took Hydroxizine for anxiety during that time because I did have a LOT of anxiety and that can also cause sleeplessness. I still have a lot of anxiety but that's another story. But the idea is that your psychiatrist may be able to give you a low level drug to help you sleep a little better.
If not, there are things you can do to help with sleep; not always easy or totally reliable but they are often helpful for me if I can have the discipline to do them. (ha)
1. Exercise, not just walking but something that gets your heart rate up, running, biking, walking quickly for several miles, moderate weight training. I took up fitness training a couple years ago and my sleep has improved dramatically.
2. If your doctor won't give you any drugs for sleep there are some over the counter things that work for some people, Benadryl (diphenhydramine) for example, meclizine, regular Dramamine. Those are non-addictive.
3. Eating a good diet can help, protein, vegetables and fruits, whole grains, things with fiber. Sugar or alcohol or a full meal before bed can mess with your sleep. Also caffeine - there's one thing I really need to give up myself.
4. If you are overweight or have sleep apnea, you might be waking up because you can't breathe properly while you're asleep. If you snore or wake up over and over again, see your provider about being evaluated for sleep apnea. I gained 100 pounds on antipsychotics and had to go to using a CPAP machine. It's helped a lot.
Take good care and hope some of that might be helpful to you.
Hi,
Thank you so much for your response.
I tried to come off Olanzapine before and felt I didn't sleep for two weeks (I must have slept a bit but it didn't feel as though I had). I hated that feeling and worried I was going to go into psychosis again after having had postpartum psychosis.
Exercise is a great suggestion, I need to do more of this as I've put on two stone, which I understand you have struggled with too. Have you managed to get your weight under control? It's so tough when your body changes and I know I myself found it hard to accept.
Thank you for the suggestion of over the counter drugs that could help with sleep. The mental health team haven't discussed any of this yet but I'm hoping they'll have something like you've suggested to help with sleep as no sleep is very scary to me for the above reasons.
My diet is very poor and something I definitely need to change.
I definitely could have sleep apnea, I've never slept very well prior to being put on Olanzapine - it's definitely something worth checking as that could give me some answers.
Thank you again x
You are right to be worried about not sleeping. That’s always something that has triggered problems for me. To make matters worse, my husband snores, pretty badly at times and has refused to get treatment for it. My last resort for this is to sleep with good quality earplugs, which I hate, but it’s become a necessity.
I gained 100 pounds with antipsychotic meds and I’ve now lost a little over half of that, about 54 pounds. I joined a cardio and weight training exercise program designed for people 55+ and started going 2 days a week. About a year ago I bumped it up to 3 days a week plus walking on other days, weather permitting. I joined a program called Weight Watchers here in the US and between the two of those got the weight loss going. I’m not sure if I’ll be able to lose the entire 100 pounds, likely not at my age, but I’m going to keep going. I already feel far, far better physically and absolutely everything is physically easier than it was with all that extra weight. I feel better and look better. Weight Watchers isn’t a special diet really, it’s a system of eating good food, low fat, low carb, low sugar, but you record what you eat and you’re allowed to have anything; you just make allowances elsewhere for the high calorie foods. I don’t know if it’s available worldwide. It’s not terribly expensive if you can access it. There’s an app.
Weight gain has been a tremendous problem during this journey and one I’m glad to be having some success in reversing. The exercise does really help with sleep too.
Trying to sleep with someone snoring is hard - I know for me I need to get to sleep before them and then I'm ok but that's hard without any help from the medication.
That's incredible that you've lost 54 pounds, you should be so proud of yourself. That can't have been easy for you. Weight watchers is also here in the UK which is great - I'll have a look into this and see if I too can join.
The weight gain is what I've struggled with too but you've given me hope that it can be reversed. My partner says how good exercise is for sleep to and I know myself that if it could help with sleep as well as the weight gain then it's worth doing x
They “say” that when you stop taking antipsychotics most people lose the weight again and that was a major motivation for me getting off. All of it together has worked. I have trouble falling asleep, like you, and I do sometimes take a hydroxizine just to settle my brain down. Once I’m asleep I usually stay asleep except to get up for the toilet.
If I can do this, you can too! You said you’d gained two stone which isn’t nearly as much. Weight loss takes effort and with the eating and exercise you do have to give up bad habits if you want to make a permanent change. But you are perhaps younger than I am and you have that in your favor!
Good luck and write anytime, WW has an online forum as part of the app too so you’ll be able to get help with that!
It's motivation for me too, I just don't feel myself as I am now which I'm sure you can relate to - the changes are hard to accept. With that said I am still so thankful to Olanzapine as it got me out of postpartum psychosis and I am forever thankful for that as that was one of the lowest points of my life.
I've not heard of Hydoxizine but I will keep this in mind for when I'm off to see if this is something my Doctor can prescribe in case I get the withdrawal of struggling to sleep again.
I'm fairly lucky my food cravings subsided after a while but I did put on the weight in a very short amount of time 😔.
Thank you for suggesting weight watchers - it's great to hear that they have a supportive online community - that really helps to have others striving towards the same goals.
Huge well done on all the changes you've made and successes you've had so far. May it long continue for you. X
Not that this is a weight loss thread but I found second nature to be really good. I too feel despondent about weight gain. It is all around my middle which is the risk area for having diabetes, high blood pressure etc.
On sleep… you might be able to find some good quality sources of advice about promoting sleep health. When my sleep is poor I know I need to “double down” on all the healthy habits. Not claiming that it will just get rid of any sleeplessness you get one coming off olanzapine, but maybe it could make it a small amount easier? Going out as soon as you can in the morning (even if only to drink your cup of tea on the front step or garden if you have one) is supposedly really healthy, even better if you can exercise outside in the morning. A walk or a run? And I’m sure you have already heard of no caffeine after midday.
Hi, I'm so sorry I didn't see this reply.
Thank you so much for the reply and suggestions ❤️.
No caffeine is a big one - I love Tea but I know it's no good for sleep and can also affect anxiety which is very bad at the moment.
Hope you're well x
Hi NMG1991,
I quit Olanzapine with no problems. I had no difficulty sleeping and basically felt no difference (besides slowly feeling better after stopping it). I was on it for a considerable short while (under 3 months), so that could make a difference.
Good luck!
I’m slowly reducing too! Don’t forget every body is different, I hope it goes well for you!
I was on 20mg, I’ve gradually reduced to 5mg then I will go to nothing in a few weeks. I’ve seen an improvement on feeling less sleepy and am looking forward to natural sleep again!
Wishing you so much luck coming off. Getting from 20mg down to 5mg is amazing. How are you feeling so far? I'm also down to 5mg from 7.5mg and they've said I'll come off at 2.5mg which scares me. X
Thank you! I feel really good in myself and less tired! I’m looking forward to sleeping naturally again if I’m honest.
How are you feeling? Well done on your reduction. Be open and honest with the professionals about your worries.
That's great you're feeling good, that's such a huge bonus ❤️. Will you take anything to help you sleep or will you wait it out until you're able to sleep without aid?
I'm feeling good on 5mg and really look forward to being off and functioning as I once was. ☺️ X
Thank you ❤️
I’m going to wait it out and see how I get on, how about you?
Glad you’re feeling good! Yeah I know what you mean I feel the same!
I think I'm going to do the same - I've heard from others that it can take a few weeks/months for sleep to return to normal but have been reassured by them that it does eventually return to normal.
Really wishing you all the best and please post if you're ever feeling like you need someone to talk to x
How are you doing? Have you come off the Olanzapine yet? I'm down to 2.5mg and feeling fine thankfully - still sleeping well thank the stars x
I’m good thank you, how are you?
I’m off the Olanzapine completely and feel good! So pleased you’re down to 2.5 and feeling fine! Great you’re sleeping well! X
Aw that's incredible news! Congratulations! What did you jump off at? My psychiatrist is telling me to jump off at 2.5mg after being on it for 3 months - I'm so scared x
Thank you! Yeah I went from 2.5 down to 0. All the best with the reduction xx
Hi lovely, how are you doing off Olanzapine? Are you sleeping well? May I ask if you're taking any other medication? Thank you and kind regards, N x
Hi, I’m doing really well thank you. Other than the odd disturbed nights sleep from my daughter being unsettled I’m able to sleep really well. I am still on the mood stabiliser lithium. Are you in other tablets?
Hi, I’m doing really well thank you. Other than the odd disturbed nights sleep from my daughter being unsettled I’m able to sleep really well. I am still on the mood stabiliser lithium. Are you in other tablets?
Aw ok. So glad to hear you're doing well. Do you think the lithium is helping you sleep? Does the lithium cause weight gain at all like Olanzapine? Thank you for responding x
thank you!
I’m not sure if it does or doesn’t tbh! I was taking them both at the same time so can’t tell! I think it can do in some patients - I haven’t put weight on I just haven’t lost any.
No worries! Happy to discuss!
Are you about to go on Olanzapine yourself?
Completely understand how it would be hard to tell in that case. That's great you haven't put weight on too. I'm sure you look fantastic the way you are 🧡.
No, I'm in the midst of coming off. Currently down from 7.5mg to 1.25mg. I've been on it nearly three years mostly through fear of coming off and becoming unwell x
Yeah it is hard to tell sorry I couldn’t be more help! Thank you lovely 🥰
Are you on any other medication?
That’s great you’re gradually coming off it. I can totally understand the fear of coming off, but reaching out for support if you need it.
That's ok, I completely understand why you wouldn't be able to answer that question.
I'm not but I am taking Magnesium L-Threonate to aid with sleep.
It's definitely a scary road to go down x
All the best with it all x
Thank you. The same to you 🧡 x
PikoruaVolunteer
Hello NMG1991 and all the members who struggle with Insomnia/sleep deprivation,
Tapering off traditional medication was only possible with a health team and my partner. My gratitude goes to an amazing Spanish Psychiatrist, as I was on very addictive drugs with huge side effects (Haloperidol, Lorazepam and Risperidone) in 2010/2011. These types of meds were the only once reactive to my body in battling the Psychosis. It took several months for doctors to find the right combination and they tried other drugs before. I stopped taking any medication after 1.5 yrs considering that the chemicals are still in your system for quite some time.
I did not sleep well until 2018. Maybe on average 3-5 hours, sometimes less, depending on my state of MH. I was diagnosed with BP1 in 2018 by Professor Ian Jones and we discussed meds.
I researched about Lithium and mood stabilisers and reflected on my life style. My toolkit is focusing on therapeutic avenues and my choice of taking CBD helped me to overcome Insomnia. My partner supports my choice and tries to keep my surroundings totally stress-free. I do not have to paint at night anymore 
I am lucky!
x
Hi Pikorua,
Thank you so much for your reply.
So sorry to hear it was a journey to find the right medication for your psychosis - that must have been incredibly hard and frustrated for you at the time.
I can't believe your sleep was off for so long, that must have been awful for you. I was off Olanzapine for two weeks and my sleep was bad and I know for me I just kept panicking that I would become unwell again.
How do you find the CBD? Does it have any side affects? I took weed once before to try and help me sleep whilst I was off Olanzapine for those two weeks and it sent me into a very scared and paranoid state of mind and I hated it. It sent me backwards. X
Regarding CBD, your ability to get it may depend on your laws in the UK, it is outlawed in some countries because it is derived from marijuana. (Russia comes to mind; we had a US basketball player imprisoned there for some time because she had some in her suitcase for pain relief purposes.) However it comes in many forms and does not have the same effect as smoking weed, or so I’m told. I personally have never smoked weed or tried other street drugs. I’ve seen enough people have their lives wrecked with that stuff.
I use a CBD balm stick for topical use for muscle pain and it works well for that. I’m very cautious about using it in case of systemic effects although I have not noticed any.
Gosh! That was serious consequences. I thought if it was for use for yourself it wouldn't be treated as seriously but I've clearly got that wrong.
That makes complete sense. I believe CBD is legal here but I would definitely need to do a bit of research around that to make sure.
That would be great if you could share the company if it's allowed. That would be really helpful. X
A quick search seems to say that CBD is legal there as long as it is sold as a food supplement and the THC level is under a certain percentage. Please check that for yourself and don’t take my word for it because I don’t live there and wouldn’t want to steer you wrong. It says that CBD is available in stores there and that may be the thing to do for you because then you’ll be certain it’s ok.
As with all supplements it’s a good idea to buy from a reputable company so you know they have some quality control.
I certainly wouldn’t expect your country to be as punitive as what happened to our basketball player but it does illustrate why it’s important to know the laws when traveling internationally.
Hope that information is helpful to you. Have a good day.
That's really kind of you to look that up for me. I'll be sure to follow that up and research a bit more. Definitely don't want any THC as I know this can cause hallucinations and paranoia and I definitely don't want that.
Gosh! Yes it definitely shows the importance of knowing the local laws around certain things.
Thank you again for your help and guidance x
Thank you all for sharing your varied experiences on the use of CBD oils in your recovery everyone.
We appreciate that the use of such products is an individual choice, however we recommend you seek advice from reputable sources like the NHS (extracts above from the NHS website: nhs.uk/conditions/medical-c...
Here are a few extracts from the NHS website:
Many cannabis-based products are available to buy online, but their quality and content is not known. They may be illegal in the UK and potentially dangerous.
Some products that might claim to be medical cannabis, such as CBD oil or hemp oil, are available to buy legally as food supplements from health stores. But there's no guarantee these are of good quality or provide any health benefits.
Specific cannabis-based products are available on prescription as medicinal cannabis. These are only likely to benefit a very small number of patients. Further, there are only a few cases where patients may be medically prescribed.
Some cannabis-based products are available to buy over the internet without a prescription.
It's likely most of these products – even those called CBD oils – will be illegal to possess or supply. There's a good chance they will contain THC, and may not be safe to use.
The risks of using cannabis products containing THC (the chemical that gets you high) are not currently clear. That's why clinical trials are needed before they can be used. Products that only contain CBD, such as Epidyolex, do not carry these unknown risks linked with THC.
But in reality, most products will contain a certain amount of THC.
The potential risks of THC cannabis products are:
* psychosis – there is evidence that regular cannabis use in some people can increase the risk of developing a psychotic illness such as schizophrenia
Take care, Rachel (APP, Peer Support)
Thank you Rachel for the information, it's nice to have the benefits/potential risks laid out. X
Thanks Rachel, good information.
Maria_at_APPModerator
Hi NMG1991, I am currently on olanzapine and planning to start weaning off it soon and move to something less strong to manage my bipolar. When I weaned off it last 2 times under the supervision of my mental health team I did struggle to fall asleep for the first one or two nights, luckily it did resolve itself. Something that helped me was to plan changes in medication during a period of low stress in my life, or a least of stability, so I could keep my familiar routine. Deep muscle relaxation also helped me during my periods of insomnia when I have been off medication, there are a few tutorials in you tube that can guide you. Thinking of you during your weaning journey,
Maria
Hi Maria,Thank you so much for your reply.
I hope the change of medication goes well for you, I know these things can be daunting at first.
That's great to hear your sleep improved. I weaned off before and was off for two weeks, in that time it didn't feel my sleep improved and I went back on Olanzapine which I wish I hadn't as most people like yourself have actually said sleep improves day by day and would have likely came back again - fingers crossed for this time around.
I'll also look into deep muscle relaxation with the hopes that can also help me
X
Hi NMG1991, I also hope it goes well for you this time around. Take care and let us know how you get on,
Maria
Hi Maria, how are you? Are you off Olanzapine yet? I'm down to 2.5mg and feeling ok and sleeping well thankfully. X
Hi NMG1991, so nice to hear from you. I am so glad you have gone down to 2.5 mg and are sleeping well and feeling OK. I managed to switch to Aripiprazole at the end, but I think my psychiatrist suggested a bit of an abrupt tapering of Olanzapine. I ended with insomnia for some weeks, till we increased the dose of Aripiprazole and now I am doing better. I wish you all the best in your weaning journey, take it one step at a time. All the best wishes,
Maria
So sorry to hear you were met with Insomnia, that's so hard to cope with. So glad to hear you're doing better now you're on Aripiprazole. Please may that long continue for you. Thank you - I'm praying and hoping it goes well x
Thank you for your reply and your lovely empathy. It is much better now, do not worry. Take very good care and let us know how you are getting on
Hello!
I was on olanzapine from 2017 on and off until 2019, and switched mainly due to weight gain which affected me more in the end ( after talking through the pros and cons with my psychiatrist). He then switched me to Apriprazole which worked better for me, but whilst lowering olanzapine via his suggested doses, I don’t recall being unable to sleep properly. This is my number one trigger too and so I think it is always a worry in terms of relapse.
I got diagnosed with bipolar in an MBU back in 2021, after an episode of PPP, but before that I had experienced what they thought of as stress induced psychosis ( I now know it was due to Bipolar but I was undiagnosed ).
I am now fully off antipsychotics and instead on a mood stabiliser only, I’ve noticed a positive change in my weight and more stable moods.
I hope your journey of coming off of olanzapine is a smooth one x
Hi I'm so sorry I didn't see your response. Thank you for responding.
It's great you found another medicine that didn't cause weight gain for you. The weight gain is very tough to accept, I know I've found the changes difficult especially when people haven't seen me in a while and comment - I know they mean no harm but it naturally makes you self conscious. Were you able to lose the weight?
I'm so glad you got a diagnosis, I imagine that must have given you some clarity and peace of mind knowing there was a reason for certain things taking place. How are you now?
I often wonder if I have bipolar - I have very high highs and vert low lows but I don't know where I'd get answers. X
I tapered off after being on it a year. Was hard to get off 2.5 for sleep. Now I take promethazine and that has helped for sleep.
nope! it’s basically just an antihistamine
That's amazing - so good to know incase I have trouble sleeping coming off. Thank you ❤️
Morning NMG1991,
Hope you’re ok? It’s Rachel here, part of APP’s peer support team. I know that sleep can be a big worry for many when we’ve experienced PP. It certainly was for me.
Do always consult your doctor about medications changes, andjust and when you’re considering trying something.
You can read about promethazine mentioned on the NHS website here: nhs.uk/medicines/promethazi...
Definitely worth a conversation with a health professional before trying something out.
Take care, Rachel x
Hi Rachel, hope you're well also.
Thank you so much. I will definitely go through my psychiatrist/Doctor before trying anything just so they can monitor things. I'm hoping my sleep will return naturally but I'm definitely more anxious about that having tried to come off before.
Thank you so much for the information, really appreciate your response ❤️.
Take care, N x
Hi NMG1991,
Thanks for your message. Coming off Olanzapine can feel daunting and stressful, especially if it’s beneficial for your sleep. I can totally relate. But you can do it!
I just want to let you know that I eventually had a positive experience coming off Olanzapine, so it’s definitely possible. As others have mentioned, I worked with my psychiatrist to taper off pretty slowly based off her recommendations. I don’t remember exactly how long it took, but it was much slower than I wanted. It took many months. My psychiatrist wanted to take a very conservative approach with me to make sure I didn’t experience mania by coming off too quickly.
I actually initially tapered off Olanzapine with a different psychiatrist, and we did it too quickly (primarily because that doctor was too responsive to my vehement requests to taper off as fast as possible). But the reality is that I didn’t know what was best for me, so tapering off that fast wasn’t a good idea. I tapered down from I believe it was 15 mg (but I can’t quite remember - this was back in 2019) all the way down to zero within a very short amount of time. And then I basically had a relapse once I came off. It was not good.
So I ultimately switched to a new psychiatrist (who I actually liked much better for many other reasons), and the second time I listened to her advice and it went much better. So my strong recommendation would be to ignore the tapering schedule that may have worked for other people, and follow the advice of your mental health team that knows you and your unique situation.
I personally hated taking Olanzapine because I felt like it made me very mentally foggy and it caused a lot of weight gain. When I was taking it, I just felt like my life was a blur and I was only going through the motions. I was very lethargic, and was so challenging to wake up at night to feed the baby. On the plus side, it did help curtail my postpartum psychosis symptoms of mania very quickly and effectively.
The second time I tapered down, I was also worried that tapering off would hurt my sleep, since Olanzapine made sleeping so easy. But because I tapered off really slowly, that ended up not being a problem for me the second time around. We had discussed that maybe I could use Trazodone if sleep became a problem, but fortunately it wasn’t necessary. Of course I slept better some nights than others, but on the whole it wasn’t a huge problem.
I see some people already commented with great advice, but to reiterate some of what was already said, there are many things you can do to help ensure good sleep when coming off Olanzapine. Here is what helped me:
1) Sleep hygiene (create a bedtime routine, stick to a regular sleep schedule, no screens before bed etc. — you can google this and get lots more good advice)
2) I slept better on the days that I exercised (especially when exercise was coupled with getting outside and getting some fresh air - like going on a walk or run).
3) Avoid naps during the day
4) If I was struggling to sleep, I would use the calm app and listen to a sleep story or meditation. There are other free meditation apps too
5) Eating lots of vegetables/fruits/fiber/whole grains/omega 3s and drinking a lot of water is also helpful. I also stopped drinking alcohol and caffeine, which helped too
6) If I did feel anxious (like I had a “to-do list” of things in my brain that I felt like I didn’t want to forget), I’d keep a pencil and pad of paper next to my bed so I could just jot down the thought and know I wouldn’t forget it. This gave me peace of mind that helped me sleep. This was better than using my phone because the blue light would wake me up.
7) I monitored my sleep with my Fitbit. In some ways it’s a little stressful to know that the Fitbit is tracking your sleep, but overall I think it’s helpful to be able to refer to data to track your sleep and make sure you’re sleeping enough. My wonderful, sweet, and very supportive husband became very understandably very anxious after my episode of Postpartum Psychosis, and he worried about me a lot. So it was probably more helpful for him than it was for me that he could check my sleep in the fitbit app to make sure I was sleeping enough. In a way, his hypervigilance could be frustrating, almost like he was policing me. But it was so obvious that it came from a place of love. I think he felt guilty that he couldn’t spot the warning signs before my PPP episode (I had a traumatic psychotic break, although luckily nothing bad happened. It was just very scary and I had to be hospitalized). Of course we had no idea what to look for, and PPP came out of the blue for us because I had previously never dealt with any mental health challenges. So for him, having the ability to track sleep gives him some reassurance (especially because it’s the simplest metric to objectively track for monitoring how well I’m doing). And ultimately that was a positive thing for us. My episode was over 4 years ago, and he still periodically asks how well I’m sleeping. It’s always a little annoying, but I think at the end of the day it’s nice that I know he’s in my corner looking out for me.
You can do this! It might be hard, but you’ll get there. Reach back out if you need more help, support, or advice. It will get better! Sending you love! ❤️
Hi Lovely,
So sorry for missing your response, thank you for taking the time to reply.
I'm happy to hear you were able to get off Olanzapine successfully by going slowly. Did you come off at 2.5mg and were you able to keep your sleep at that point?
Sorry to hear the first time you relapsed, that must have been so scary for you. Did you realise you were becoming unwell? I always worry about becoming unwell but not recognising I am unwell.
To be honest. My mental health team are in the mindset of 'just come off, it'll be fine'. I have spoken to a fair amount of people who have been on Olanzapine and I know for most people that unfortunately doesn't work.
I agree with the feelings on Olanzapine. I actually never thought about it that way however now I am thinking about it I couldn't agree more. I know I think about sleep a lot - like I cannot wait to go to bed which is so sad as I would like more energy to enjoy things. I do agree that it works well for it's intended purpose though and definitely took me out of a very dark place.
That's great the second time tapering went much better and most importantly you kept your sleep.
Thank you so much for all the great advice.
It's great to have a supportive husband - my partner I think sadly forgets I'm still struggling mentally and that it's not just a case of no longer having the psychosis and being back to normal. It's a long hard struggle.
N x
Hi there,
I'm currently trying to come off Haloperidol the same as Pikorua. Like her and survived with colour I've had a horrendous time on the medication. I've had insomnia ever since I was put on it a year ago and the insomnia gets worse with each reduction of meds. I am so sensitive to changes in antipsychotics. My private psychiatrist wants me to reduce by about half a Tablet per month I'm on 4 tablets 4mg but have only managed to reduce by almost one tablet and that's taken me since October. The slightest reduction and I literally cannot sleep at all. Personally I think there had to be alternatives treatments for psychosis such allowing a person to go into hospital and come down and calm down naturally as drugs don't suit everyone. Glad to hear that now you're reducing you're not suffering. Hugs Jo
Hi Jo,
So sorry for missing your response, thank you so much for taking the time to reply.
Sorry to hear you're having a difficult time reducing your medication, I completely feel for you as it's not an easy road to go down. I'm surprised the medication itself is causing you insomnia which is getting worse with each drop. I was always led to believe antipsychotics were sedating. The insomnia must be awful for you to cope with. Have you tried anything like Magnesium, I take Magnesium L-Threonate which is said to aid natural sleep. I can't say if it's working for sure as I'm still on 1.25mg of Olanzapine but I think it is helping.
N x
Hi NMG1991, just to say my consultant reduced the olanzapine dose really gradually. Although I woke up early in the morning around 5am a few times in the week immediately after I stopped taking it, and lay in bed stressing about being awake, by a fortnight later I was sleeping fine and not waking up until my 4 year old came in to see me at 6.45 or later. It’s now a couple of months later and I am still sleeping really well. Hope you manage to get some good sleep too!
This is so great to hear. Thank you so much ❤️ x
May I please ask what dose you jumped off at? X
Gosh it’s all a bit hazy now I’m afraid! I’m pretty sure I tapered from 7.5 to 5 then to 2.5 but pretty slowly. I was impatient to come off but my consultant made me take it steady. It worked for me so I really hope it works for you too. That thought of not being able to sleep is just so scary isn’t it? Even now months later if I can’t get back to sleep in the night I worry PP is coming back xx
Thank you so much for sharing. Did you jump off at 2.5mg or did you go any lower? Thank you for your response. It really is scary. I completely understand your worry as I have the same fear. X
Hi hi, I was apprehensive about coming off olanzapine but while taking it I did feel lethargic and subdued and like everything was a bit dreamlike and life felt as though it was through a filter. I wanted to feel like myself again and eventually that desire overcame my hesitation. I jumped off (very gently) at 2.5. I think I took a couple more tablets later in the week after I gave up as I was so frightened about not getting to sleep. I think be kind and gentle and patient with yourself. Give it two weeks to let your body settle. I avoid any caffeine at all and try to have a bath - even just a 10 minute one - before bed every night. I put Epsom salts in mine, I see others have recommended magnesium as well. Have you tried yoga nidra? There are some lovely ones on youtube but try to get it set up so it’s quick to find so you don’t scroll through with the blue light on your phone and wake yourself up. Lavender on your pillow is lovely too. You’ve got this - you’ve done so well to taper so low already! You’re in good hands with your consultant. Take care xxx
Hi, thank you so much for your reply.
I completely understand the feelings you had on Olanzapine. I've heard of people taking the tablets as and when you need them which has helped others.
Two weeks is a good suggestion. I didn't quite give myself enough time to stabilise the first time and I definitely need to bear with it this time.
I'm taking Magnesium ahead of coming off but I'm sure the epsom salt before bed would be a great help too so I will do that too.
I haven't tried yoga nidra but I will look that up and give it a go - yoga is meant to be incredible. I also love lavender - another great suggestion.
Thank you so much for your help.
You take care too lovely.
N x
Ellie_at_APPPartner
Hi NMG1991,
Yes, weaning off medication can be tricky, and the fear around relapse, and not sleeping, is really hard to deal with.
I have come off Olanzapine quite recently, after I had to take it again after a relapse (the relapse was triggered by having a horrible virus, and not being able to sleep, as well as suffering a close family bereavement). Like others have shared, I tapered off it slowly, with help from my GP. I reduced it each time for a month, and found this reassuring, as it was done very gradually. It was from 15, 10, 7.5, 5, 2.5 and then I came off it, so it took a few months to wean down.
I did feel the difference when I came off it, more energy, less sedated, and somehow more able to connect to other people too, and just more like myself. It didn't effect my sleep thank goodness, other than having more energy in the evening and not dropping off to sleep on the sofa at 9 at night. But I have still managed to sleep well since then. I try to keep a good bedtime routine, doing relaxing things before bed etc, like reading a book.
I hope this is helpful to hear, and that you can manage to come off it smoothly
Ellie
Hi Ellie,
Thank you so much for your reply.
So sorry to hear you relapsed, that must have been very scary for you. May I ask if you were hospitalised or did you realise fairly quickly that you were becoming unwell? I always worry I'll become unwell but won't recognise it.
That's amazing you came off successfully and were able to do so gradually. Maybe I'm holding for too long. I held each drop for three months. I'm currently down to 1.25mg (or roughly that from splitting the pills in half) and was planning to hold for three months.
May I please ask if you are on anything else to help with sleep?
Thank you
N x
Hi N
Yeah the relapse wasn’t nice at all of course, but it wasn’t as traumatic as the first time. I think all my experience and support I received at APP helped me. I didn’t have depression afterwards which was such a relief.
It was very difficult , the question of whether I recognised I was getting unwell. I was away for Christmas while I became really unwell physically with the virus so just kept telling myself it was just a cold and I was ok when really I should have contacted the doctors and got antibiotics etc earlier, which was hard to do with being away. Then my mental health deteriorated. I think because I had been well for so many years I got quite over confident about not becoming unwell again. I would say just get help quickly for anything that disturbs your sleep.
I’m not on anything to help me sleep, I find I go to sleep without any problem now thank goodness. But I would definitely take medication and do everything I could if my sleep was disturbed again.
I hope that it isn’t too scary hearing about experience of relapse. I think it’s balancing not getting too fearful about it that it makes you anxious, but also acknowledging that there is a risk and that we must look after ourselves!
Take care and I hope you can come off your medication ok
Ellie
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