Coming off Olanzapine

I think I have been over the top with my previous posts through over worrying, a bit scared of change and perhaps I have rushed coming off olazapine a little. I am 6 weeks approx since I started reducing from 2.5mg. I am now down to a quarter of that, approx 0.625mg and apart from a little buzzing / ringing in the head, very slight anxiety at times, I feel ok. I plan on staying at this level for a week to get used to it and then crrying on reducing. In 2 weeks that is 8 weeks in total I will be free of all medication. I do have slight moments of feeling as if the safety net is being removed. But I look forwards and continue with determination. I think what pushed me to start coming off was my daughter saying to me, "Dad why dont you laugh and joke with us anymore?" I realised I wanted more out of life and to wake up from being a bit of a zombie.

Hi Matlor

You are so right. I can not find any information about olanzapine and 'reduction syndrome' even though I have experienced it first hand, The psychiatrist and psychologist i saw were unable to tell me that the anxiety I was getting was related to reducing olanzapine. It was only when i had the nouse to talk to the drug company that the drug company acknowledged it takes months and not weeks to come off this drug. The drug company recommended alternating doses before dropping a dose for example 5mg and then the next night 2.5 mg and then 5mg the next night for a few weeks AND THEN drop to a steady 2.5mgs for a few weeks. What I had done was drop straight from 5mg to 2.5 mg and then bam hello after a few days I had anxiety issues for weeks.

Thank you Bev for the good luck wishes. I do have a pill cutter.

There is one document I found about coming off anti depressants and 'reduction syndrome'. This was put out by the Royal College of Psychiatrists, based on research. The time frames they give are if you have been on a maintenance dose of an anti-depressant then you should reduce by 1/4 every 4-6 weeks. I hope this is helpful. I don't think olanzapine will be much different.

The only reference to coming of anti psychotics I could find was in wikipaedia and they said that coming off them needs to be managed so that it is not too quick as the psychotic symptoms may return not because of the illness but because the drug was stopped too quickly. (just as you said Matlor).

Personally i have found that the psychiatrist I have dealt with has always thought the problems I have had reducing drugs or trying new ones was never due to problems with the drugs but were personal defects of me such as 'being over anxious trying a new drug' or 'no-one else has had that problem'. I have hated those moments as they make you feel so alienated and helpless.

Well done Michael and Matlor. I hope you are both doing well today.

One method that my pharmacist recommends if you feel rubbish on a reduced dose then go back to the next one up you felt good on and stay here for a while before reducing again.

Hi Bonna . You have a lot to think about. I look forward to everyones posts.

Peace to you

Marbel

Marbel

All what you sad and experience has been tried and tested in my case. I have been off all medication for about 3 weeks and I am waiting for my sleeping pattern to settle down without resorting to sleeping tablets and the vague nausea to go.

I feel very resentful that the medical profession did not support me to come off medication although the chances of a genuine repeat of my psychosis was low. As you say everything I suffered was put down to my weakness and not the effect of withdrawing from the drugs. It is only because I knew it was caused by withdrawal on the second and third time I tried that I persisted. Each time I did it more slowly until this time, armed with more knowledge I succeeded.

The memory of that all consuming anxiety lives with me as it was far worse than the psychosis. tI frightened me so much that I felt I was on medication for life. It was only after reading about what other people had experienced I could relate it to what had happened to me.. It gave me the courage to try again. What was difficult was believing that such a small dose could still have such an effect on the body.

I got as far as ..625mgs every other day but it still had an effect when I stopped completely. Some people are on 20mgs daily. I did find the first reductions easier than the last and I did stay on a reduced dose of 2,5mgs for a number of years.

I found some research papers highlighting the problems with deciding whether it was a re-occurrence or the effects of coming off medication and I printed it off for my GP to read.. I still got the impression he did not believe me. He still felt it was better to stay on the medication as I was well and working and he did not want to rock the boat..

In a years time I will know if it has all been worth it but in the mean time my blood results return to normal, my gut works well and my heart rate has returned to normal without the effect of the medication.

I think reading everyone's experiences has been a big help to me and I want to thank you all. After reading further I now know I still have quite a way to go. Getting to 0.625mg has not been easy. Coming on here and reading has been the only help to me.

Its like your ability to deal with any normal level of stress has been brought down to zero. Whilst on the medication its as if you are muted from stress a little and are able to cope. Coming off olazapine too quickly will leave you exposed. Like anyone that has not suffered from mental illness we all have a level of exposure to stress and if overloaded it will affect your ability to sleep, racing overloaded thoughts, tension and causing mood changes, and when you reach your tipping point anxiety and maybe a panic attack. Because anyone on this medication is at zero level, its very hard because you reduce medication a little, then a little more exposure to normal levels of stress occur and cause anxiety for a while. Too quick a reduction and anxiety hits you too hard. But after saying that, I think coming off this medication you have got to expect a little anxiety. Look at it as a positive if it is mild and you can deal with it, it will reduce as the days go on. I believe it is your mind adapting to this new reduced level of medication and you then adapting to this new level of everyday stress. Control this level of exposure slowly. I am amazed at how such a tiny amount of this medication has such a big effect when you get down to the last small reductions.

hi guys and girls, so glad I found this forum! I have just read most of your stories and all I can say it is wonderful to hear that there are people out there who are experiencing the same things as I am as i thought I was alone and a crazy person who was trying to hold his life together. i have been on Olanzapine for 10 years for psychosis. I have tried to come off it three times with no luck. Each time I get overwhelming fear, auditory hallucinations and anxiety and no sleep, which kicks it off. I think everyone knows what I am thinking, the TV is talking to me etc, all extremely upsetting stuff. so i am so pleased to read your similar experiences and now understand it is not me and I'm not crazy but the withdrawal from the drug that causes these issues. I am on my latest attempt to get off the drug, as of the beginning of the year I decided that I did not want to keep throwing pills down my throat so I have made a plan to come off the drug. i have been on 5mg for a number of years. I started by dropping one night to 2.5mg and did that for about a month then did two nights over the week at 2.5mg for a month now I am on 2.5mg 3 nights and 5mg 4 nights. So far so good. It is a slow process as you say marble. I would like to say to everyone what has helped me is my decision to get fit and healthy. I gave up alcohol a few years ago and I have just over the past few months really focused on getting fit, run most days or do some sort of exercise. i find it helps with sleep which is my biggest enemy, if I don't sleep the psychosis comes back it seems. If anyone is interested please contact me if you need any help or support. As I said, I thought I was the only one in the world like this so to read about you all is very uplifting. As an idea, would anyone be interested in starting a proper network group where we could all talk about experiences and support each other when going through any issues, i.e.: coming off this drug. Thank you for sharing. Colin

Emis Moderator comment: I have removed the email address as we do not publish these. Please use the message facility if you wish to contact each other out of the public forum.

hi moderator, where do i find the message facility?

Hi Matlor, Michael and Sack

Please Michael could you let me know where I can find the above research you mentioned about the problems identifying reoccurance of psychosis. I am also trying to educate my friend who works in mental health and it interests me personally.

Thanks all for sharing and I can relate to what you have said Michael about the effects the illness has on levels of stress. I retrained to be an occuptional therapist after my first psychosis but couldn't deal with the stress of working in the community mental health team or inpatient unit. I had many sleepness nights. After a year I gave it away and today I get by by doing less skilled work where I can walk away every day and not worry about the effect I have had on others and how they are managing.

Racing overloaded thoughts, as you mentioned Michael, is also a warning sign for me that things are not going well. Usually I try to take some time out at my Mothers, God Bless Her, where it is very peaceful. She has been an amazing confidant and support. Over the years I have dropped coffee and tea also as stimulants don't seem to work in my favor.

Since I stopped my anti depressant , after slowly decreasing over the last year, I am trying to follow the pharmacists suggestions to help the brain. She says coming off meds and stopping them I need to take vit c, drink water, take omega 3,6,9 (I take flaxseed oil) and exercise. oh yes and Magnesium. I hope this is helpful to others.

Thinking of you all. Peace Marbel

Hi all, hopefully the moderator will allow this link on here. I am about to read a book called secret squirrel business The road to mental health recovery. Here is the link if anyone else would like to read, if the link does not appear message me and I will send it to you. It is a workbook as well as a read.

http://www.secretsquirrelbusiness.com.au/pdf/secret-squirrel-business-book.pdf

hope all of you are well!

Colin

Hi

One article I found interesting and relevant was 'Why is it so difficult to stop psychiatric drug treatment? It may be nothing to do with the original problem.' by Joanna Moncrieff.

I have had to go back on a very small dose Olanzapine..625mgs every other day to keep me well and in good physical and mental health. I felt a complete failure as I was drug free for about a month before I was waking with a feeling fear a dread and feeling vaguely anxious and nauseated most of the day. I then rationalised it as if this was me drug free then I will see what was the minimum amount that I could take to feel better. This seems to be it.. Whether it is occurrence or withdrawal I do not know but as it came on after a month and disappeared after 3 doses I suspected it was re-occurrence It felt different than the withdrawal effects. As I have to get on with my life and I was very difficult to live with - it was holding me back I gave in. I am hoping I do not get any of the nasty side effects as it is such a small dose. Sometimes you have to compromise but I expect I will try again perhaps when I retire!

Hi Marbel and all,

Marbel my previous posts are just my thoughts and points of view and not any other research.

Its a fine balancing of many things as you come off Olazapine and maybe other drugs.

As I get to a small crumb of this med now I find I am losing a bit of weight because my appetite has gone down. I still monitor myself and mainly know how I am doing by the sleep pattern. How much sleep, how quick to get to sleep, and quality of sleep.

I also seem to keep a check on whether I am thinking too deep and being obsessed by any one thing. Speeding myself up seems to overcome this, like taking the dog for a brisk walk etc..

I get a very small amount of mild anxious moments now. Still reading everyones posts with interest.

Hi Matlor, Michael, all.

I was just reading the last two posts you both wrote and wanted to add that I totally understand what you are saying. Before I went on the meds I was experiencing some strange things, possibly due to some mild drug taking….who knows. Auditory hallucinations and anxiety and an inability to reason what was going on. Although mild and not something I felt I could not deal with they were still there. So now when I lower my dosage and try to come off I am still aware that there are parts of me that I have to accept are not the same as I was many years ago. I am hoping that my slow withdrawal from the drug will allow me to deal with these issues a little more easily if they arise rather than be exposed all of a sudden by stopping the meds. But as you say Matlor maybe a compromise is also needed? its a tuff one as I would love to be drug free but have to realise that may be very difficult. when I was on 10mg I ballooned from 80kg to 105kg, Over the last 6-7 years I have got that down to 83kg now. I cannot emphasis enough how getting fit and healthy is a major factor. My biggest enemy is lack of sleep, which brings on the symptoms. Since I have really focused on doing some sort of reasonably intense activity each day my sleep patterns have stabilised and this is while I have been reducing my dosage. Mentally I feel better, although still have some mental activity/issues that are difficult to deal with, but I manage. I also think that acceptance is a big part of it. If you can accept that there is a problem you are probably more ready to deal with it, at least that seems to work with me. I hear so many times though this story and its true of myself also….people on these meds start to feel ok so they want to stop and come off, then it all falls apart. This is true of myself on many occasions. However at the end of the day I have begun to tell myself I am essentially a drug addict and have been for the past 10 years, there is nothing wrong with wanting to be free of drugs but I am aware that I will have to deal with life and alls its ups and downs if and when that day arrives. This is why i am now on the slow path to recovery. I use the word recovery because thats what it is, a recovery. I have made positive changes to my life that has started to produce positive results.

Good luck to each of you,

It is uplifting to hear about your journey and recovery process also, please stay in touch.

Colin

I'm so glad to find this board. This drug is not to be taken lightly. My psychiatrist prescribed it for me as a temporary stabilizer during an extreme anxiety attack I went through in February. It knocked me out but I could tell that any drug that could so thoroughly wipe me out at 5 mg was a serious drug. I've gotten addicted to other pharmaceuticals that are supposedly non-addictive, so I proceeded with caution. After a week I cut it down to 2.5 and stayed there for about two weeks. Then I tried to go down to 1.25. Each step down caused major discomfort which confirmed for me that for whatever reason, my brain chemistry has an exaggerated affinity for this drug. After about 2 days on .625, I began to feel ridiculous, cutting such small amounts, and just went cold turkey. That was 3 weeks ago and I can tell you that it's taken almost all of that time for the medication to leave my system. I know the half-life indicates it should have been gone before now, but I truly believe it completely exited at the 3rd week. I wonder if the clearance of the drug was delayed because my doctor had simultaneously increased my lexapro dosage? Maybe there was just too much going on for my brain to process cessation of one drug and increase of another simultaneously? When I asked my doctor about the half life he shrugged and said he had no idea. Ugh.

Anyway I thought some of you might want to know that the time for this drug to clear your system isn't an exact science. I've never had problems with other drugs clearing more slowly than expected.

In the meantime of course I'm tired of all the anxiety and sleeplessness that I'm experiencing through this whole ordeal.

It's somehow comforting that I'm not the only person on the planet dealing with the after affects of this drug, even on such a short duration.

Truly this drug should be very carefully considered before one takes it. I would never take it again for something like anxiety. Maybe for people who are truly bipolar it's a good drug. I can only hope that my brain will settle down soon.

Good luck to all of you. Ciao. Steve.

Hi everyone,

i wanted to share a story about my self/journey on this drug…olanzapine.

I have been on it for just over 10 years now. During that time I have had time to reflect on my life both during medication, pre medication and now looking forward to post medication. I'll start at the beginning, pre medication. My life was based around travel, moving homes, continually changing jobs, making new friends. Looking back now I was also the victim of bullying even though I did not realise it as this.I also came from a broken home. Needless to say I was unsettled, emotionally unstable and living an unhealthy lifestyle, mild drug taking, unhealthy food, lack of exercise etc. At the end of that path I had what was diagnosed as a psychotic episode where i heard voices and began to feel as though i was being watched/monitored, the radio/tv started talking to me, people with abilities that seemed unimaginable were threatening me etc etc. Enter the medication, for the first 4-5 years i was just in zombie mode trying to make sense of everything that had led me to this point. However, I began to feel more settled. I went home and spent time with my mother who was ill. I got a job and worked hard, saved and after only one year bought a small business. I bought a house, a home that was mine, a place that I had not had for so so long. This enable me to rest, to calm down and take one day at a time. I was still on 10mg a day but I was getting better. I had moved back to my childhood town and began to reconnect with old friends. It was a slow process don't get me wrong and people could not understand why I was different and would shut myself away but I was coping, on my own. Then about 5 years ago I met my now wife while holidaying in Australia. 9 months after we met I packed up my suitcase and moved to sydney. We got married last year and have a beautiful two year old daughter. During the past 5 years I have decreased my meds from 10mg down to almost 2.5mg per day. I have done that with her support, trial and error and hard work while holding together a business. As of today I have a plan to get off this drug permanently, however it is not an overnight process. What I can say and the point of this post is that while I am aware of the side effects of this drug I also have a lot to be thankful for being on it. it has enabled me to take a better look at myself and see my shortcomings, understand somewhat what has been holding me back, identify my strengths. In short it has made me look at my life and helped me make positive changes. I am grateful for that opportunity. Just today I rememberd back to my last episode over this past xmas when I went cold turkey. Looking back In amongst all the chaos that was happening at that time I saw a little boy, a boy who was very afraid and didn't know what was going on or who to turn to, who to trust. i realised today that I recognised that little boy, it was me. I had not seen myself for so long that I did not recognise myself, as I always present an image of hardness and uncaring. Today i realised that that little boy was here, waiting for me to take his hand and say its ok, its safe. After all the years of bullying, torment and doing what others wanted me to do rather than what he or i wanted to do he had returned because he knew I was doing all I could to help him. I have a plan and that plan is to spend time with that little boy and show him he belongs in this world and that he has a lot to offer. I take time out for him and myself to do wholesome things like a stroll along the beach, getting fit down the park, sometimes my wife joins me too. I have been able to see and achieve all this while on this drug so I wanted to say to each of you that while there is nothing better than being drug free... if you are on this drug use it as an opportunity rather than see it as a burden. There is a lot to be learned in life, if you can learn from yourself then you will be that much better off.

Thank you for taking the time to read.

Colin

Thank you for your story Colin. I found it very encouraging.

Good luck to you and your family.