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Coming off Olanzapine

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I have been on Olanzapine or over 6 years now from when I was diagnosed Borderline personality traits and all I can say is that I have endured 6 years of living hell. I have been taking 10mg every night for that time and piled on loads of weight, felt lethargic no confidence and started experiencing heart pains. I have had absolutely zero social life in that time and felt unable to think or communicate with other people. I decided just over a month ago to stop the treatment and now am starting to feel much better. I have lost a stone in 2 weeks and look much better ,I am now able to think clearly and have much more energy and motivation to do things. To help me stop the Olanzapine I have avoided alcohol completely (this always put me back to square one in the past). I am finding it difficult to get off to sleep without the aid of the drug but more excercise through the day is helping with this. I will never return to taking this drug again as I feel it has robbed me of 6 years of my life.

11 likes, 335 replies

335 Replies

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  • Sack
    Sack Guest

    Posted

    Hi guys and girls, not sure if you got a message through from Andy about his story coming off the drug and then having a heart attack? It shook me up after reading it that he had a heart attack. However, i feel that the real reason for the developing of the coronary heart disease was due to lifestyle factors and increase in weight, which he said he balloned to 17.5 stone. I have said before staying active and physically fit is something that should be done, not just for those on this medication but for anyone. Doing so helps lower the risk of many diseases as well as coronary heart disease. Anyway, i was a bit shaken but thought it through and wanted to say to anyone else dont be alarmed. Andy did make a good point though...join a gym. everyone should do this though regardless of their situation, ie: get fit-stay healthy!

    Colin

  • mikey727
    mikey727 Guest

    Posted

    Please could you help me im mikey please text me and give me as much advice you can on how and what im going to feel and suffer coming of olanzapine 20mg per night for the past 15 years. Ive stoped it now for 5 days and im in so much disscomfort. Ive got no in tention of going back on it ive just gone cold turkey. So please text me with all the info in what im going to go through. Im still in hospital ive got no family no friends lost them all due to being in side to long.

    Emis Moderator comment: I have removed the mobile number as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service .

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • marbel
      marbel mikey727

      Posted

      Hi mikey

        please do not go cold turkey this will only probabely return a withdrawal psychosis and the doctors will say this is evidence you need to stay on this medication.  To come off slowly is the only way of avoiding this catch 22. 

      Please go back to a lower dose of 15 mg and after some time say three months try reducing by alternating 15 and 10mg for a few weeks. Use a pill cutter.  Yes it is really bad to stay on these drugs too long.  Have you stopped them before?. I feel for you.  Most of us do want to come off them and evidence shows that in a 20 year period people who come off them do better than people who stay on them long term.  Long term use tends to make the neurotransmitters sensitive.  Hence the need for a very well thought out plan to come off them.

      Get some fish oil tablets and vit c.  This will also help the brain as you come off them to recover.

      Also if you smoke this tend s to metabolise the drug quicker which means they put you on a higher dose for them to be effective.

      So if you gave up smoking you would be better on a lower dose and it would be just as effective.

      Arohanui  marbel

    • marbel
      marbel mikey727

      Posted

      hi Mikey by the way I have been on some anti psychotic since 1992 with only a couple of years break so you are not the only one that has been on these drugs for a long period of time.  My cousin is deperate to get off them too and has been on something for decades.  I think there are not enough professionals who know how to manage a slow coming off or believe it is possible.  In some way it is up to us to find someone to go with us on the journey or manage it ourselves and show it can be done.  Marbel
    • Sack
      Sack mikey727

      Posted

      Hi Mikey,

      I agree with Marbels words below. A slow plan is neaded. I also was on a high dose for almost 10 years. But over the last 2 years I have dropped down to 1.25mg and am about to start going lower. It takes time mate but you can do it. i read that you spent some time on the inside and that you dont have any friends, no problem either mate. i bet if you asked most people who are on these drugs they too would have few freinds, if any. I myself have struggled through with the help of only one or two people and in large this forum. i found that the people who have helped me the MOST have been on this forum here doing it themselves, not those who have no idea of what it is like for me. It was here that I learnt about dropping down the doses and making a plan. If you can survive on the inside you can survive getting off this drug. My advice: make a plan, get fit, stay healthy, enjoy life as best you can. I always check in here to see how everyone is getting on. This is my support network of like minded people who are walking my walk and talking my talk. Stick with it, you will be fine and you will get there!

    • Sack
      Sack marbel

      Posted

      Hi Marbel, I started a facebook page for coming off Olanzapine. I thought it would be a good way to share/help/support us and others. Please feel free to visit, I will make you admin if you like? I really want to create something that benefits others on this drug. You have provided so much info, support and help to me I would like to return that somehow. here is the link.

      Regards,

      Colin

    • marbel
      marbel Sack

      Posted

      Hi Colin

      WOW what an awesome idea and awesome page. I think that is such a great way to reach out to people.  I am not on facebook yet but thank you for the offer to be admin. It made me feel warm to think I have been helpful to you.

      You have done so well to get down to 1.25mg.  I have tried this week to drop from alternating 1.25 and .625 to taking .625 for two nights and then one of 1.25.  I did this for two cycles but am feeling a  bit out of sorts.  First irritable for a few days, wakeful sleep and down today from bad dream about being a useless friend!.  I also have a bit of stress as I have strained my back badly and looks like I will have to give up my cleaning jobs which is good income for me. And I get stressed from the thought of  not being able to contribute to the household. I will prob pick up my sewing and go back to the market selling stuff.

      I started the ZIZYPHUS last night and am thinking to go back to my last three month drug regime of 1.25 alternating with .625 until there are more settled times.  Next time I think I will take 1.25 Monday,  Wednesday,  Friday and then .625 in the weekends. Any thoughts Colin?.

      A friend has given me some posters for a free game/program for youth 12-19 who are stressed, anxious and down.  It is called SPARX and is free in Nz for everybody. It was developed by a team at Auckland University including child psychiatrist, psychologists etc.  It is ok for children as young as 10 to do. The game was played by 94 youths and 93 went to counselling/clinical psychologist.  It was found to be just as effective as those who went to counselling or the clin psych.  It reduced depression,anxiety and feelings of hopelessness and improved quality of life. If anyone out there is in New Zealand please spread the word to youth.  Maybe this could be a resource for the website too Colin?.  It is based on CBT techniques that work on the basis of what we do and think effects how we feel.  So it teaches skills in a fun and friendly game.  The participant makes an avatar and goes on a quest and learn s tools for life as they go.

      Peace Maree

    • Sack
      Sack marbel

      Posted

      Hi Maree,

      I just had the same experience. I dropped from being on 1.25 everyday except Saturday and Wednesday down to nothing every second day. Was alright for first two days then had a bit of an experience so went back to everyday except Saturday to calm down. Recovery was immediate which is encouraging. I feel I am on the right track and I think I will go down to .625. I wasn't going to but I see the benefit of doing so, slowly slowly wins the race. I'm sorry to hear about your back. I hope it is not to bad. My psych has given me the all clear to come off meds. He said just to have on hand if I need them. So I am viewing that as my opportunity to get clean via weening and in the instance such as the last one just use them as a temp measure while I fully recover. Couldn't have done it without your advice on how to reduce though, so many thanks. Hope all is well and take care.

      Colin

    • marbel
      marbel Sack

      Posted

      Hi Colin, sorry you had a blip. I prob should have taken 1.25 for a couple of nights like you suggest to get back on track.  Actually I might do that over tonight and tomorrow night.

      I just been for a walk and going to do some relaxation with some lavendar oil.  While out i looked a bit more closely at my thoughts about being a bad friend/person and realised it was a fraud.  I am not perfect by any means but am pretty concientious in most things i do including my friendships.  Sure I have made mistakes and lost friends or become out of touch but i have to give myself a dose of forgiveness.

      That is good news about the all clear from the doctor and a few months ago you were  on 2.5mg so you are doing amazingly well.  Prob the longer we have been on them the longer it takes to get off them. I am kind of thinking i may need to stay on this dose for a few months. Or drop one extra to .625 every second saturday.  Anyway I am not sure if the body is registering much of the drug at .625 but I think all the advice I keep getting is taking something is better than nothing.  The pharmacist keeps saying take it slow!. 

      All the Best to you Colin.  You are a great help and friend to me.

      I wonder is Dhrti out there ?.  I have not heard from you for a while.

      How are you doing Mikey?

      Peace Marbel

    • Sack
      Sack marbel

      Posted

      hey Maree,

      no worries! thats what friends are for. I have set myself a goal to be off this stuff within 24 months, that was from Jan 1 this year, so far so good. I know what you mean about your thoughts. I have real problems with them too. I find really negative or obscene thoughts enter my head always at the most inappropriate times. To make it worse I'm convinced people can hear these thoughts. as an example, last night I had to meet some people to hand over some keys for a rental unit we have. I was talking away to them and all was going well. i then turned to talk to one particular person and as i was doing so this obscene word just entered my mind as i was looking straight at them. The mood immediatley changed and the expression on the persons face was almost of shock. So the conversation ended and we parted company. I dont know if its just paranioa or not but it seems to happen a lot. i googled people hearing my thoughts when I got home as it completely ruined the rest of the evening feeling bad i had insulted someone I didnt know and there is surprisingly alot of info on people being able to hear your thoughts. so that is pretty scary walking around knowing it is actually a possibility....in fact im pretty sure there has been a time when i too have heard others thoughts. However I have to tell myself that is not who I really am and I never had those bad thoughts before the psychosis. 

      I am in a mental health group called Grow. Its based on the AA model. In it they tell you you must forgive yourself, so you are right there on that one. I'm sure you are a good friend also. We have all lost friends Maree. I like you have travelled and its often hard to keep connected, even to family. I think the most important thing i have learned through this whole psychosis/drug experience is that i am so much better off now than I ever was. Sure I live away from family, I dont have any close friend connections here, Im unemployed but I have knowledge about certain things that I never thought imaginable. I am calmer. i am able to put myself in others shoes. I have a greater appreciation for the world and everyone around me. all these things i never had while I was "sane", lol! So everyday i see this as a positive experience rather than a negative, sure their are negative aspects but the truth is my life before was more negative than positive, I just didnt realise it.

      I havent heard from dhrti either. Im so grateful for the zizyphus info. that really helped me get down to 1.25 easily. I am going to use it to get onto .625

      All the best Maree! It is always good just to read your posts as it lets me know I'm not alone and that you, me, dhrti and all the others here are walking the same path, together. Even if we are not face to face we are side by side, supporting each other through this virtual world.

      warmest regards,

      Colin

    • marbel
      marbel Sack

      Posted

      Hi Colin,

      how are you going?.  I am still alternating 1.25mg and .625 mg!. 

      Did you give me the name of the article by Robert Whitaker called "Do Antipsychotics worsen long-term schizoprenia outcomes?.  Martin Harrow explores the question".  If you have not read it I would be interested in your opinion.

      Anyway a must read for everyone I say, professionals and those of us who take these things and those thinking of coming off them.

      I would say that if you decide to come off them then the ONLY WAY is slowly slowly.  Have you noticed how there is NO info out there to tell you how to get off these drugs without inducing a psychosis or withdrawal syndrome?.  My osteo said to me that is because they don't expect you to come off them!.  and I think she is right. 

      I have a new brand of drug called zypine which is round so that will make it easier to cut into little pieces as I reduce!.  However I am holding fast at the moment as when i tried to reduce a few weeks ago I felt very unsteady emotionally. 

      Marbel

       

  • matlor
    matlor Guest

    Posted

    Hi all

    Why is it so difficult to get off after reducing down to what seems to be a very small dose. I am on 1.25 mgs every other day and have been on this dose for months but still get effects if I miss a dose. Is this the minimum that I can survive on?

    It is the nausea and feeling of impending doom that reminds me to take the tablet, why can I not be free from it.

    i regret the day that I agreed to take it but it did cure my long standing nausea, which was diagnosed as dysfunctional dyspepsia . So should I be grateful. I am now the healthiest I have been as I have managed to come off my reboxatine  and surprisingly my blood pressure, pulse rate and bowels have returned to normal. I only have my neutropenia to worry about. Is it drug related? Should I worry about my 3.75  mgs of Olanzapine a week or get on and celebrate my health.

    i am going on a 3 month holiday and will decide when I get back as I do not want to rock the boat at the moment.

    i would be interested to know if anyone else has developed neutropenia or is it coincidental and not drug related.

  • magnus40841
    magnus40841 Guest

    Posted

    were you drug induced psychosis?   and did it work did you get off?

    because im trying 5 mg a month, i got off the injections. (which were

    giving me a sore neck and spine all over) but its hell and

    im fighting with my lady, cause i cant help but overreact in small

    annoyances. (i also overreact in joy as well, when laughing at silly

    inconsequential jokes, i become in silly joyful moods as well)  both

    things leave me fairly alien to everyone else and it disturbs them.   

    i feel absolutely terrible, i feel like theres a void in my head,  

    but it was like this before when i was coming off the injections then 

    i was better, and now i have lose the last drug and go totally off them 

    completely.   im afraid it could be permanent damage, so i was wondering

    if you tell me whats happening to you now, im hoping you succeeded and

    got off them successfully.

  • mjmdesk
    mjmdesk Guest

    Posted

    My Parkwaysychiatrist agreed that I was over medicated and started by reducing my dose of Olanzapine. He has reduced my dosage  to 3/4 of my previous dose. Next month he will go to 1/2 the previous dose until I am at a theraputic level. Then he will  either reduce the high dose of Divalproic Acid or the Carbamazepine. I must admmit that I am sleeping better and don't feel as zombied out during the day. He's on the right track. I forgot to mention that I am disagnosed as bi-polar 1 with severe tendency towards a lot of manic episodes and an inability to get to sleep at night. My doctor is reducing the Olanzapine slowly since that is the safest way to go.
    • mjmdesk
      mjmdesk

      Posted

      I also must admit that I have started a new herbal medication to help me sleep called zizyphus. It's working out just super. I'm getting 8 to 10 hours of sleep every night. I wake up so refreshed. Must admit I've been dreaming a lot more as well. Nice dreams. I take 2 pills at supper then 2 at bedtime. Truly does the trick. I'm motivated to GET to sleep in the first place. Go to bed aroucnd 11 PM and wake up around 7 or 8 AM. Love the pleasant dreams. Makes getting  to sleep that much more inviting.

      BTW  my  name is Mike J M....

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