Coming off Olanzapine

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I've been on this drug for 4 years now on 10mg a day, the doctor prescribed it to me for my anger along with fluoxetine, since then my energy levels have plumeted I've just got no get up & go in me, I'm constantly sleeping, put on a few stone & have since become type 1 diabetic which I here Olanzapine could of contributed too. I've tried coming off cold turkey but the insomnia was too much, I'm now trying to taper myself off it, taking 7.5mg then down to 5 & so on. Has anyone got any advice on how I can successfully come of it. I've had enough of it now & I want my life back.

Thanks 

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15 Replies

  • Posted

    Hi Doc,

    Tapering is the way to go. I was on it for 10 years. Tried cold turkey a few times and no good. I had got myself down to 5mg a few years back. Then about 18 months ago set a plan. Slowly slowly wins the race. Here is what i did. Starting with 5mg I did 3/4 weeks on 6 days 5mg and one day on 2.5mg. Then I went two days on 2.5mg and 5 on 5mg for about another 3/4 weeks or until I felt ok. Important to note here not to go consecutive days on 2.5mg. Do say a thursday and a sunday. Give yourself time to adjust. My biggest battle starting out was the fear that I wouldnt be able to survive the next day on the lower dose. Once you get into doing this regularly though that diminishes and I found it became more of a quest/challenge to go the whole day without fearing the unknown. I started being more active as I was finding ways to take my mind off that worry. So, once I was on 2.5mg every day I stayed there for awhile to adjust and get comfortable, let my body and mind adapt to a new way of life, more active, and deal with the day to day issues that would come up that previously had just passed me by as I was a drugged up zombie. Then I did the same method down to 1.25mg. I used a pill cutter from the chemist to do all this by the way. Same method, roughly the same time frames. I did have a few ups and downs and near misses though, it wasnt all plain sailing. You have to be prepared to knock back an extra dose if you need. I found that I was easily able to drop straight back down to where I had been if I did hit a rough patch and GET on track again. Going from 1.25mg to .625 was tougher, dont know why and I have heard the same from others so you have to slow it down abit more. But by now you are on so low a dose and should be getting your life back that stretching it out here doesnt seem so bad. Keep on that trajectory until your completely weened off. Took me about 18 months in total and I had planned for two years. Important factors to remeMber. if you start and go for it make sure you make some other changes...ie: exercise regularly, eat healthy. limit/eliminate acohol. I have been clear for about 4 months now I think. I had a wobble a week ago actually though so it is still there but I took 2.5mg for two nights ploughed through and am back on nothing again feeling fine and operating as normal. Another thing I find helps incredibly is a thing called sleep hygeine. Bed before 9 and up after 6 ie: get 8 hours sleep. Insomnia being the biggest hurdle you have to get sleep and you need to reprogram yourself to do that. It's tough but it can be done! I realised the only way I was getting off this drug was to change my life. So I did in everyway. Exercise - I became a personal trainer. Food - I am almost organic now. Sleep - thats tougher because you get off this stuff and suddenly you have the energy of a lion, could be in part because Im fitter and healthier too...? Alcohol - stopped completely, water only. Friends - dropped the negative ones. This drug is so powerful you have to take drastic measures to get off it. Iv read most of the comments on every thread on this forum and the ones who are winning the battle are the ones making the changes, the ones who arent winning...I guess there is a reason why.

    another thing I found helped was this....you have to be honest with yourself, I dont know what your condition is, mine was/is psychosis. Once I told myself that I had it and I would probably always have it and that I was different to others it seemed less  daunting. As a ridiculous example I guess its kind like when you hear people say "it was so much easier for them when he/she admitted they were gay" bad example I know but what Im saying is if you are honest with yourself about why you are on this drug it will help you get off it, IMO. Remember, slowly slowly wins the race. Dont be in a hurry or you'll be on this longer than you want.

    Good luck and stay vocal on here too, it helps to be connected to others on the same path while you are  going through this. I answer most posts that come on here as a way of support. You can do it. Best advice I can give is "failing to plan is planning to fail". Make a plan/timeframe and stick to it as best as possible.

    Good Luck .

    Colin

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    • Posted

      Colin, Just to set out my stall. I'm not on olanzapine, but I'm a former nurse, current crisis-line volunteer and carer for an 80-year-old friend who's been prescribed this awful drug for dementia-related psychosis (an off-label use, I know, but dementia sufferers all over the world get prescribed antipsychotics). I'm therefore quite well-acquainted both with psychosis and the use of antipsychotics. I originally got into these mental health forums in a desperate bid to get more first-hand accounts of the effect of olanzapine so I could better help my friend, who has suffered devastating side-effects from a whole series of different antipsychotic drugs over the past year.

      From what I've seen in here, I suspect you may come under attack (though certainly not from me!) from many people for telling Doc how to tail off his dosage without medical supervision. I'd just like to say how encouraging I found your post - particularly the reference to being completely honest with oneself.

      I've never been psychotic but I suffered a number of severe depressive episodes as a young woman, nearly 50 years ago. Medication never helped and my experiences with psychiatrists would have been laughable had they not been so tragic. What pulled me through in the end was the realisation that I had to be completely honest with myself. I think I spontaneously (re)discovered mindfulness before it was (re)invented!

      It's much easier to self-manage depression or anxiety than full-blown psychosis without medical help, of course. But my experience of listening to the stories of people like yourself in the course of my voluntary work has convinced me that it's perfectly possible. It is, however, a life-time's work that requires constant vigilance.

      I wish you both every success and happiness.

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    • Posted

      Lilly, Doc, absoluetly correct. I did this with my psychs help. But I told him I was doing not the other way around.
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  • Posted

    Just reaklised I left out an important bit of info. I took you to two days on 2.5mg and 5 on 5mg. So, once you are comfortable with that regime drop another day to 2.5mg. Now it's 4 on 5mg and 3 on 2.5mg. Space the days out again so its not back to backs on 2.5mg, something like mon, wed, sat or whatever works best. Each time you drop down you have to work out what days to mix and match so you dont leave yourself exposed to going over the edge. Just do that untill you are 7 days 2.5mg, take awhile on that to adjust and then set sail for 1.25mg doing the same thing. hope that helps.

    Colin

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  • Posted

    Thanks for your replies, I'm going to take it slowly because I want to succeed and to prevent some withdrawals, I'm taking 7.5mg now at about 20:30 each night, I've had to get my diet in check in recent months due to my diabetes, I too am looking into becoming a personal trainer and trying to keep my mind active. Should I do 7.5mg 6 days & 1 day 5mg for 3/4 weeks, or should I keep at 7.5mg for 3/4 weeks then cut down to 5mg? Thanks for all the advice.
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    • Posted

      Hi Doc, 

      It's up to you. It's all trial and error. You have to start somewhere and test the waters though.....

      One other thing I did that helped me and I believe was the catalyst for my success so far was...I stopped taking the drug at night and swithched to the morning.

      I used to take it 6pm religiously every night.

      Then started taking it at 7am. The difference was immediate.

      I went from being a grumpy zombie in the morning to being reasonably mild mannered.

      The first night I slept 10 awesome hours, like id never been on meds.

      Taking it in the morn kind of made me high I think through the day....so it was easier to deal with things.

      I used to crash abit around 11am for an hour but then would get a second wind. By 8pm I was wacked and would go to bed and sleep.

      Seemed to work for me...

      The reason I changed is because my prescription box actually said "take during the day"...I'm like WTF...why have I been taking these at night? Id never even bothered to read the box in 9 years......

      Colin

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  • Posted

    hi doc thanks for your post i have been going through the same symptoms

    i dropping of 15mg day now dropping to 10mg 2.5 and quater just dropping quater of 2.5 a period  of 2 months then going to try another,quater of 2.5 making it 14 and halfmg over 2 months got to do it very slow if having problem tapper up then come down slowley all the best i also comming off same as you want my life back.

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  • Posted

    Hi everyone

    I was on 5mgs a day for nearly 10 years.

    I have been taking it slowly slowly but I am stuck now on 2.5mg per week. I cut the tablet into 3/4 pieces and take it every other night. If I reduce it any more then I cannot sleep and feel sick on and off all the time with a feeling of dread for the coming day. This is the 3rd time I have tried to get below this dose with the same effect.

    As I now feel fine on this small dose - I would give up and stay as I am but I am Neutropoenic and I have read that it is a possible side effect along with many others. I have made many healthy life style changes of healthy eating and exercise. I will have to work on my beadtime routine as I usually stay up too late and listen to Podcasts to get to sleep.

    I keep up with the discussions to pick up tips. Has anyone else noticed a change by taking it in the morning. I am sure I would never remember as I always associate tablet with bed time.

    I cannot believe that such a small dose still has such an effect on the body and general well being.

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    • Posted

      I've never taken olanzapine myself, I just got into this section because I was researching it for a dear friend who was having terrible side-effects on 10mg per day. I am, however, a former general nurse, and was interested by your post.

      I'm wondering why it's so important to you to get off the drug completely. I honestly doubt whether the neutropenia would be dangerous, even long-term. My own white blood-cell count has been low for years now as a result of a mild auto-immune condition I suffer from, but I still seem to have very high resistance to infections. I only get a cold about once every three years and am still in excellent health in my 70s.

      If you feel OK on this minute dose, then why not stick with it? I've noticed that some people on this site get a bit competitive about it. While I can sympathise with the desire to be completely drug-free and I'm only too well aware of the awful effects of olanzapine in high doses, I don't think you need to treat this as some kind of challenge. Maybe you should just give thanks for the benefits you're getting for it and continue to work on your sleep hygiene and generally maintaining a healthy lifestyle. 

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    • Posted

      Matlor,

      I went through the same thing when on 2.5mg. Try 2.5mg 6 nights and one night at 1.25mg. Get comfortable with that routine ie: until you can get through the day on the smaller dose with ease. then do another day later on in the week at 1.25mg, same thing...get used to that before going further. this can take a few months but it was the only way i have been able to get clear. 4-5 months now. Upside of this is you start to deal with day to day issues on a slower basis rather than having everything hit you at once, which sends you over the edge. The big change happened for me when I started taking the meds at 7am instead of 6pm, i was on 2.5mg then as well. Being slightly out of it during the day helped me cope with daily life more easily. I then introduced a bedtime routine of 9pm ABSOLUTE latest! 10 mins after that and it could be touch and go the next day. Did not always get to sleep straight away but i had made the committment to myself to do it which i feel is half the battle. Here is a little tip I picked up the other day...if you are having trouble sleeping ie: wide awake staring at the roof...try opening and closing your eyes rapidly continuosly. i find after a couple of minutes my eyes get tired and heavy and i fall asleep shortly after. I use it in times of need mainly becuase if I did it every night it probably eventually wouldnt work...but it helps and anything that helps is worth doing in my book. also, dont look at the setbacks as a setback. i had a turn just the other day...got stuck on the computer for 3 days debating about whether god exists or not blah blah blah...anyway got so worked up fell off the cliff and had to drop a tab on two nights. but that was it, learnt my lesson and back to nothing again. Everytime something goes wrong analyze it, learn from it and move back on track. you will get clear because you want to, not because you have to...it's just a matter of time now. Good luck.

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  • Posted

    Now on 2.5mg ed, struggling to cut the things, I'm working out quite a bit and knackering myself out so sleeping's not so bad, going down to 1.25mg in a couple of weeks, insomnia's not as bad as I thought it was going to be, I'm just worried about coming off completely.
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  • Posted

    Lily it is important to me to be drug free so that when I get any blood abnormality or illnesses I know it is not because of the drugs and it my body wearing out. Also I was so frightened by the powerful effect when I stopped the medication initially. The overwhelming anxiety that totally incapacitated me, - far worse than the acute psychosis I suffered after my brother's sudden death. Also now that I only take 2.5mgs a week it still has such an effect when I stop it makes me realise how it messes with your body and brain activity.

    The Neutropenia has been stable for a few years and does not affect me and like yourself I very rarely get colds and infections. It may be unrelated but I do not want it to get worse though. It is interesting that you say you have a mild auto-immune condition as I have now developed an auto-immune skin complaint recently and I felt it may all be connected.

    When I can sleep I do feel very healthy and I should be thankful for that.and I have manged to get off all other medication started during my psychosis. Count your blessing I say to my husband as we  both enjoy travelling and can only do it if we both remain healthy.

    I hear what you say but it would be nice, but not essential, to return to feeling well without powerful medication..I do not feel a failure if I do not succeed in my goal. I do feel that the medical profession are influenced by the drug companies and it has taken them a long time to even recognise that there is a discontinuation problem with some people. For years it was put down to a return of my psychosis and i knew it was not. Now when I explain I need this small dose he feels he is prescibing it as a placebo but I know it is not in my mind. When you are labelled with  psychiatric diagnosis it is hard to get the doctors to take you seriously.I have always responded by arming myself with information and challenging them or going ahead with my beliefs and seeing what happens. They do not always know best as there are still gaps in their knowledge and it can be more of an art than a science sometimes.. Forums are very useful as you get snipets of useful information and can compare notes with people with similar problems. This often sparks an area for research for imformation.

    I hope I also give some support with my comments.It is far easy to stay with the treatment especially as I was only on a small dose and did not suffer any obvvious side effects but there are many us trying to see whether we really need the drugs. It is like an addiction if you become unwell when you stop them and have to have them continuously but no worse than insulin for the diabetic I suppose. It is when you know that you may not need them for the original complaint but now have to take them just to feel good, I find it hard to accept.

    How do you get spell checker back on this site as I seem to have lost it.

     

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    • Posted

      Amen to the doctors being influenced by the drug companies! I think Big Pharma has far too tight a hold on the entire health industry all over the world.

      And I'm right behind you on wanting to take control of your own mental health. I finally managed to do that more than 40 years ago, after suffering moderate depression during my 20s. Fortunately, I was never put on anything stronger than amitryptiline and librium. The latter was the first benzo to come on the market, and heaven knows why anyone thought that would help with depression! I was very lucky there. Benzos hadn't been around long enough in the 60s for anyone to recognise the danger of dependence so GPs and psychiatrists (even dentists, for goodness' sake!) were handing them out like sweets. I liked the safe, cocooned feeling librium gave me, but it suddenly occurred to me after taking them for a couple of weeks that this wasn't right, and some instinct made me flush them down the toilet. Now I work as a volunteer on a crisis line and listen to terrible stories of benzo dependence on a regular basis, I realise just how close I came to disaster!

      Your comments about placebo effect made me smile. Though I'd managed to get a handle on my own mental condition by the time I was 30 (well, more or less) I was left with various hang-ups, one of which was the fear of not getting enough sleep. This naturally led to frequent sleepless nights, and I got into the habit of taking phenergan (one of the older antihistamines that causes drowsiness) several nights a week to get a good night's sleep. But the crazy thing was that I was cutting 10mg tablets into quarters, and that still worked. (For reference purposes, you can take up to 25mg three times a day for hay fever.) I once told my GP about it and she burst out laughing and said: "That's practically homeopathy!" And some mornings I'd get up after a very good night's sleep and find the tiny blue quarter-tablet still on the kitchen table! The power of the mind, eh?

      You might be interested to hear that the thing finally ran its course after 35 years, when I retired from paid employment and no longer felt under pressure to sleep well. Nowadays I find an extra glass of wine in the evening works just as well and tastes better than phenergan! OK, OK, I'm not suggesting everyone does this, but my liver is well past its three-score years and ten so it won't have to hold out much longer.

      There's a spell-checker on here? I never knew that! No doubt Alan, our friendly neighbourhood moderator, who really does seem to read all these posts, poor man, will chip in and tell us how to access it if there is.

      Hang in there - I can tell from your posts that you've got the right attitude and you'll overcome your mental health problems.

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    • Posted

      There never has been a spellchecker on the site as such. Some browsers did used to auto spellcheck such as Chrome. I will ask about adding a spellchecker or allowing built in browser checkers to work but as there are so many browsers/phones/devices etc it may not be viable. 

      We are looking at an edit facility so you can correct things after posting, see link below to vote for this.

      http://patient.uservoice.com/forums/141505-general-feedback/suggestions/7016180-editing-our-own-comments-in-discussion-forums

      In the meantime if you want to spellcheck you can type your post in Word or simialr, spellcheck it then copy and paste into here.

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