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
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! 💚
Thank you so much for your reply. Was your sleep affected for a while or did you manage to sleep ok? X
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
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
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 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
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
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
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