☼ holly57: hello - tapering off olanzapine / Zyprexa

[holly57]

 ChessieCat, Glosmom, and Spideygsm...Thank you all for the encouraging words.

 

Spidey - congratulations to you, as well!  It was very validating to hear of someone else having the sleep problems.  As long as we can work around it, right?  My only concern with it is that lack of sleep can contribute to psychotic symptoms reemerging.  That is why I nap in the day and if I feel drowsy at 7 pm, I will go on to bed to get those precious hours of sleep in.  For example, two nights ago, I went to bed at 8:30 and was up at 1:30...went back to bed at 4 am and slept until 6:45.  So far, so good.

 

Glosmom - You are welcome.  I am so proud to be able to post a positive story.  Going as slow as I did, I never experienced any type of withdrawal except for a short lived depression when I hit 2.5 mgs.  My dear husband understood and really helped me through it.  It helps so much to have support...I know some must take this journey alone.  Thank God for internet forums.

 

Chessiecat - You understand!  SLOW is the ONLY way to go   Once you get it through your head and understand, you gladly take the time to do the taper properly.  I cannot wait for you to post someday that your taper has ended!  Don't be afraid!  In my case, I was a little nervous the first couple of weeks and when nothing happened, I forgot about it!

[Spideygsm]

Holly,

 

I don’t nap at all. Never been able to nap no matter how tired I am. I try to go to bed at the same time each night at 9:30-10:00 pm each night. I usually wake up around midnight. Usually I don’t talk back asleep. Every once in awhile I’ll fall back asleep until around 3:30-4:00 am like last night. It makes no difference in how I feel. I always feel like I never slept. I swim at 5:00 am 6 days a week. That wakes me up and I feel really good through the morning. If I stay busy and do something through the entire afternoon, I get by. The late afternoon and evening is the worst. I feel very drained and that’s when I feel the worst. I deal with it. I rather feel completely drained and tired for a few hours in the evening and restless nights than that drugged feeling I always felt while taking  Zyprex. You described your feelings very well. Impossible to understand unless somebody else has experienced the hell.

 

Glad you’re feeling better. Hang in there. It’s only going to get better from here forward. The worst part is way behind us. That’s how I look at the situation. 

[Happy2Heal]

hi Holly

just curious about how you are doing

[holly57]

Hello, fellow travelers   

Hello, Happy2Heal (We are the same age...I am 61)

 

My gosh!  I have been free of Zyprexa now since 2/22/18.  One year and one month!  I can say that I am doing really, really well.  I'm so happy!  I can't believe that even just 18 mos ago, I was still taking this drug and afraid of the jump that I was eventually going to have to do.

 

Nothing adverse to report.  Sleep is good...I usually sleep 6.5 - 7 hours/night.  No psychiatric symptoms.  No melancholy or depression.  So much of the old me is coming back!  I've rediscovered my joy of music and cooking.  I've even rediscovered the love of my kitty   I've lost 14 lbs of the 32 lbs I gained while on Zyprexa.  I've not been to a psychiatrist since Aug 2016.  I don't think about mental illness anymore.  It's as if I went through a year of a very bad dream and its over now.    Of course, you can never say never.  My family knows the symptoms to look for and if I ever needed treatment again, I would do it...especially since I know how to come off the Zyprexa now.  I do take care of my mental health.  I don't watch or read things that might trigger great stress or emotion in me.  

 

Well, just wanted to check in and let everyone know that so far, my taper and discontinuation ofZyprexa/Olanzapine has been successful.  I wish you all the best on this journey

[Happy2Heal]

hi holy57

Congratulations!!

it's great to have normal emotions, eh?

 

you can write a success story now,  have you thought about doing it, or is this post your success story?

Typically the mods close your intro thread after you write a success story.

 

 

I'm so happy for you!! THANKS so much for coming back and letting us know how you are doing 

 

PS

just curious, do you still have tinnitus? I have it from time to time and think it's at least partly age related and maybe stress related.

It seems very common amongst my friends (of similar age)

[Carmie]

Hi Holly, 

 

Congratulations on coming off your meds and doing so well. Yay! Thanks for sharing. 

 

We are just a bit concerned about you, as you said you might go back on Zyprexa in the future as you know how to taper off it now. Just because we’ve come off medications once, doesn’t mean it will be just as easy next time. Our bodies become sensitised when we go on and off meds. I’ve been on heaps of meds and now every tiny change effects me. You said you would go back on them if your family said you needed to, if you did go back on them we would caution you just to take a tiny amount.

 

I’m glad you’re taking care of your mental health and staying away from things that trigger stress. 

 

Sending hugs🤗

Edited March 23, 2019 by Carmie

[Carmie]

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

[RachelSusan]

Hi holly57,

 

Thank you for taking the time to come back and update us. I am very happy to read that you were able to get off and feel so good.  Your story gives me joy.  Best wishes to you for a continued happy life.

 

Rachel

[Guest]

Hello Holly57,

 

So so glad to hear your positive success story it truly is motivating and inspirational, I was wondering if you can clarify your final steps at tapering off of zyprexa. I am currently at 1.25mg from originally being at 15mg daily and I’m getting ready to taper down to 0.625. I know it’s not the recommended 10% but I have strong confidence in my self from my previous reductions and I usually hold for 2 months or so to stabilize, and if something negative should occur I will reinstate to stabilize. 

 

I was reading your post and if I’m following it correctly you too at one point went down to 0.625mg and I believe after awhile you started taking it every other day then every two days then every 3 days. Please correct me if I’m wrong for this is why I want clarification on your final method/schedule of tapering, how long did you hold etc. 

 

I’m so happy for you and your new found life after tapering off zyprexa/olanzapine. 

 

Thank you, cheers!

 

-Brock

[hayduke]

Hi Holly57,

 

Well done and great to hear things are going well.  Always nice to see that it can be done 🙂

 

I was able to make big cuts at first but I'm finding 2.5 and below is pretty slow going.  Worth it for a good result though.

 

Cheers

[holly57]

Hi there, fellow travelers 🖐️  I cam back and saw I had a few questions so I wanted to answer those of you who had one!  I appreciate everyone's words of support and I thank you so much!  💜

 

Happy2Heal - Yes, I still have the tinnitus.  I don't know if it's from the psychosis and subsequent Zyprexa or if, over the years, I damaged my hearing from headphones.  My husband has it too so I don't feel alone.  I have a pretty good case of it and honestly, just about the time I thought "I don't know how I'm going to deal with this for the rest of my life", I became desensitized.  Which means, I hardly every notice it now.  If I think about it, I notice it but I just get busy with something and I'm back to not noticing.  I feel very fortunate to be at this stage.

 

Carmie - I would only go back on Zyprexa again IF a doctor said I needed to be on it.  If I ever became manic or psychotic again, It's kind of a slow immersion and you don't realize you are getting sick.  But, my husband knows the symptoms to watch for and he knows to get me to an ER.  I would not be adverse to going back on it or a comparable med because I know now that it is possible to taper and I am not afraid of that aspect anymore.  Hopefully, I will never be back to that state!  Yes, I now believe strongly that we have to take care of our mental health just as we do our physical health   One rainy Saturday, I will come to the site and leave my success story.  I think that is very important to leave positive outcomes online.

 

Brock - At the bottom of this post, you will see my tapering schedule.  The key to my success was going S.L.O.W.   The first time I went off Zyprexa, I just quit, cold turkey, and my symptoms came back.  I was hearing voices within 3 months and becoming slightly delusional.  I told my husband that I needed to go back to the doctor.  Yay for me!  He put me right back on the Zyprexa and told me that I could NEVER come off...that my illness came back.  I just couldn't believe it.  After everything I had read, I felt certain that my symptoms were from cold turkey quitting not illness.  I stayed on the medication this time for a good year and let the medication do what it was supposed to do.  I waited until I "felt" good about beginning the taper.  This time, I said if I couldn't be successful, I would do as my doctor said and stay on it for life.  But, I did make a pact with myself to go very slow.  I knew from everything I read that it was key to coming off successfully.  Yes, I know this site does not recommend skipping days but I did because I could not cut my 5 mg pills any smaller.  I had not problems from it but again, I went very slow.  I think once or twice, I had to go back up on my dose and stay a while longer.  I also became somewhat depressed when I went under 2.5 mg.  It lasted about 3 months but I got through it.  After that, I had no more problems except lack of sleep sometimes. When I finally reached .625, I did it every day for a while, then went to every other day, then every third day.  I then felt like I could jump but I told myself it was ok to go back to the .625 every other day if I had any symptoms or did not feel well.  I could hardly believe it but, Brock, after my last dose, I never looked back.  The first month, I was a bit nervous but after that, I knew I had made it!!!   Brock, I do not recommend anyone coming off Zyprexa unless they are willing to go back to a doctor and become medicated again IF the mental illness ever comes back.  I cannot deny that I became sick.  Please make sure that you have trusted friend or family who knows what the symptoms are of your illness and if they ever notice symptoms, they will take you to a doctor.  Also, have someone that you can talk to.  I have my husband.  I'm a firm believer in talk therapy and working problems out within yourself instead of cookie cutter medication.  Yes, some people do have to be medicated for life but many DO NOT.  Best wishes to you 👍👌💙

 

hayduke!  Yes!  it is slow going, the lower dose you take.  But, IT IS SO WORTH IT!!!  You may be tempted to go faster but DO NOT DO IT!!!  Just keep going at a snail's pace and you will be successful in the end!  Congrats on getting as far as you have!  That took dedication

 

To everyone else, thank you so much for your kind words.  I cannot believe how fortunate I feel to be free of olanzapine/Zyprexa!  I made it!  SLOW is the key.  Almost 14 months now

 

 

 

 

 

[Guest]

Holly57,

 

Thank you for the reply and I’m glad you’ve had success with tapering and eventually coming off zyprexa, I’m happy for you!

 

I just wanted to know if when you began your taper or when you got off zyprexa completely did you start having dreams?

 

I’m currently tapering (0.625mg) and I noticed I’m having a lot of vivid dreams, I really didn’t dream much when I was on my highest dose of zyprexa (15mg). I’m just curious if this could be a good sign that my brain is ‘waking back up’ and/or healing by sorting out my problems. 

 

Please give me me your personal experience for this topic, this applies for anyone else who has experience coming off zyprexa who is reading this thread. 

 

Thank you in advance, cheers!

 

-Brock 

[gladtobehere1984]

Hi Holly,

 

First of all thank you for sharing your positive experience with us. It's so rare to find one online, but it's also very important for fueling one's hope. It's great to hear that this drug prison ends at the lower doses and you get your zest for life back.

 

I'm also withdrawing from Zyprexa. I started at 10mg and now am at 6.875mg. I drop around 6-7% and wait for 4 weeks before I make another drop. After I get to 5mg, I'll start waiting 8 weeks per drop.

 

Interestingly, I've met one other person online, who has come off Seroquel (300mg) successfully in about 6-7 years, and they also did not do it by dropping 10%. They dropped 25mg each time until they got to 25mg and then divided that in 4 and stopped them one by one. What was similar to your taper is that the person waited around 6 months after each drop. So bigger drops, but much longer wait time as well. And if she felt "shaky", she would go back to the previous dose and wait a while to stabilize. (and she said it always stabilized)

 

This brings me to my question(to you and everyone else reading): Do you think it's better to drop larger doses (not exactly %10) and wait longer (6-7 months), or drop %10 each time and wait 4-8 weeks?  I'm wondering whether dropping higher doses and waiting longer actually is better in the case of withdrawing from antipsychotics. The reason is that with antipsychotics there seems to be a big time lag between when you drop a dose and you see "psychosis" emerging again. So if I do %10 every 4 weeks, then if something develops at (say) month 5, I might not be able to know which dose drop actually caused the problem, and that would also mean I would not know which dose to go back to , to stabilize things again. 

 

I'm doing the %10 method (actually %6-7) but reading this second success story doing it the other way puts a question mark in my mind.

 

Thank you in advance for reading and your answer,

All the best.

 

 

[Shane88L]

Hi Holly,

 

Thank you for writing your positive post... It helps!

I hope you're keeping well!

 

Best wishes,

 

Shane.

[holly57]

I see I had some more questions so I will attempt to answer you all 💬 

 

Brock702 - I also take Suboxone which, unfortunately, causes me to not remember my dreams!  I have been on it since 2007 and have not remembered dreams since being on it.  So very sorry I cannot answer your questions about Zyprexa and dreams but my best guess is that the Zyprexa probably does mess with our ability to remember dreams.  Your dreams may be remembered now and it may feel very "bold" as you've been not remembering them for a while.  I do so miss remembering my dreams!  I used to have some fantastic ones LOL

 

gladtobehere1984 - That is SO smart of you to slow down your taper once you get to 5 mg.  I cannot emphasize enough how important a SLOW TAPER is.  I had literally no problems coming off Zyprexa and I attribute it to the very slow taper I did. I tend to agree with you that dropping a bit higher dose but using a longer period of time would be better.  Of course, all of us are different and I did go on how I felt when dropping.  It's almost as if I had to get to a point where I forgot I was tapering to do another drop.  It was when I got to a point that I realized I was taking literally one pill a MONTH that I knew I was going to make it and I got so confident at the end.

The most important thing in an anti-psychotic taper is to go slow, slow, slow.  I did it the wrong way the first time and my symptoms were back within 3 months.  You have come a long way and that is a very big deal!  You will make it because you are willing to do what it takes to make your taper successful.  Very important also is to have a trusted family or friend who understands the symptoms of your diagnosed mental illness and can steer you back to a doctor is needed.

 

Shane88L - Thank you for the well wishes 😽  I am so happy to be able to post a positive success story because I could not find any when I started my taper.  I found one where the poster had been successful in jumping off but you had to read through paragraphs of all the horrors she went through getting off.  I think what gets most people into trouble in a taper is impatience.  There is no substitute for going slow.  Best wishes to you, too!

 

 

[gladtobehere1984]

22 hours ago, holly57 said:

gladtobehere1984 - That is SO smart of you to slow down your taper once you get to 5 mg.

Hi Holly,

 

Thank you so much for your reply and words of encouragement. I actually did a change of strategy and decided to drop %10 every 4 weeks until 2.5mg. That's because the zombified state I'm in right now is pretty unbearable, and I feel like I can't bear it for another full year for it to go away. (It will take 6 months or so if I lower the dose by %10 every 4 weeks). Now that I read your reply, I might think about this again. I read that you felt more like yourself once you were below 2.5mg. Was the drug also disabling for you before that point? 

 

As an interesting coincidence, I found a video yesterday, where a psychiatrist talks about taking the pill every 2 or 3 days instead of everyday. I was going to post it here today, and you posted today as well  I think when I'm at my very last dose, I'll also spread the doses over 2 days at first then 3 days then a week, instead of jumping from the last dose all at once. Here's the video:(he talks about this at around the 11 min mark)

 

[holly57]

GladtoBeHere1984 - That is SO interesting!  That may be why, when I got to the lowest dose possible and started skipping days, that I was successful!  Thank you for posting that!

Yes, I was a zombie and began feeling emotions again when dropping under 2.5/daily.  It may be different for you.  Realize that and don't base everything on my experience.  We are all different   But YES, I describe myself as a zombie before that.  I could not cry, did not feel emotion, could hardly feel love!  I was very melancholy...I did not want to go anywhere, just wanted to sit and knit.  I would look at people in a grocery store and think "I used to do that...plan meals, shop, etc...."  I couldn't do that anymore.  I told my doctor about it and all he wanted to do was put me on yet another drug.  I absolutely felt it was the Zyprexa doing this to me because I was not like this before Zyprexa.  Yes, I had no symptoms of psychosis anymore but at what cost?  I did stay on the Zyprexa  until I felt like I was symptom free long enough to have a fighting chance of getting off.

If someone had told me that it would take me almost 3 years to taper off Zyprexa/Olanzapine, I would've said in the beginning that I could not do that!   But, I did!  I still am amazed.  It is one of the things I am most proud of in my life.  I would also suggest to stop reading about tapering the drug on the internet.  I stopped that too at a certain point.  I was bored with it.  Yes, when starting, read others stories to find out what works and what doesn't.  Implement your plan of action.  Have a plan of what to do if say, you do a drop and don't feel good, etc.  Get on your plan and stay off the message boards.  All they ever did was scare me to death.  I do believe that people that are successful are out living life and don't have time to be on a message board.  It is those who are having problems, not doing it correctly that are on there looking for tea and sympathy.  Make your plan, implement it, and go live life.  I forgot that I was even tapering much of the time!

[Gridley]

On 8/7/2019 at 9:31 AM, gladtobehere1984 said:

where a psychiatrist talks about taking the pill every 2 or 3 days instead of everyday.

 

Skipping doses is equivalent to reducing your dose by 50% and is not recommended by SA.  Skipping doses causes the amount of medication in your bloodstream to go up and down, battering your nervous system and making withdrawal worse.  

 

Skipping Days vs Every Day Dosing Graph

 

 

 

[hayduke]

On 8/16/2019 at 2:40 AM, Gridley said:

 

Skipping doses is equivalent to reducing your dose by 50% and is not recommended by SA.  Skipping doses causes the amount of medication in your bloodstream to go up and down, battering your nervous system and making withdrawal worse.  

 

Skipping Days vs Every Day Dosing Graph

 

 

 

 

I work by this principle as well Gridley, but infrequently bounce amounts of olanzapine around that settle comfortably within a few days.  From what I read on here that sort of dosing might be more brutal with SSRIs.  There are also studies with neuroleptics showing good or better outcomes with alternate day doses as well, some referenced in the video gladtobehere1984 posted.  May relate to half life of metabolisation or the pathways the different classes of drug affect, both, or who knows.

 

Again my preferred approach is to work with a steady daily dose, but I do wonder if some of the neuroleptics, specifically olanzapine here, might be more forgiving than most of the SSRIs when used more intermittently. 

[gladtobehere1984]

On 8/15/2019 at 5:40 PM, holly57 said:

GladtoBeHere1984 - That is SO interesting!  That may be why, when I got to the lowest dose possible and started skipping days, that I was successful!  Thank you for posting that!

Yes, I was a zombie and began feeling emotions again when dropping under 2.5/daily.  It may be different for you.  Realize that and don't base everything on my experience.  We are all different   But YES, I describe myself as a zombie before that.  I could not cry, did not feel emotion, could hardly feel love!  I was very melancholy...I did not want to go anywhere, just wanted to sit and knit.  I would look at people in a grocery store and think "I used to do that...plan meals, shop, etc...."  I couldn't do that anymore.  I told my doctor about it and all he wanted to do was put me on yet another drug.  I absolutely felt it was the Zyprexa doing this to me because I was not like this before Zyprexa.  Yes, I had no symptoms of psychosis anymore but at what cost?  I did stay on the Zyprexa  until I felt like I was symptom free long enough to have a fighting chance of getting off.

If someone had told me that it would take me almost 3 years to taper off Zyprexa/Olanzapine, I would've said in the beginning that I could not do that!   But, I did!  I still am amazed.  It is one of the things I am most proud of in my life.  I would also suggest to stop reading about tapering the drug on the internet.  I stopped that too at a certain point.  I was bored with it.  Yes, when starting, read others stories to find out what works and what doesn't.  Implement your plan of action.  Have a plan of what to do if say, you do a drop and don't feel good, etc.  Get on your plan and stay off the message boards.  All they ever did was scare me to death.  I do believe that people that are successful are out living life and don't have time to be on a message board.  It is those who are having problems, not doing it correctly that are on there looking for tea and sympathy.  Make your plan, implement it, and go live life.  I forgot that I was even tapering much of the time!

 

Hi Holly, thank you for this encouraging post! Funny, my doctor wanted to do the same thing when I told him I felt like a zombie; he wanted to prescribe either lithium or an SSRI.

 

Same here, I also look at people and remember I used to do the things normal people seem to do. I'm very asocial now and basically run away from people which is the complete opposite of who I normally am. Anyways it's great to hear about your success story, thank you again for taking the time to post it here so that we can all be inspired as well. Take care

 

On 8/15/2019 at 7:40 PM, Gridley said:

 

Skipping doses is equivalent to reducing your dose by 50% and is not recommended by SA.  Skipping doses causes the amount of medication in your bloodstream to go up and down, battering your nervous system and making withdrawal worse.  

 

Skipping Days vs Every Day Dosing Graph

 

 

 

 

Hi Gridley,

 

I agree with that and that's why in my post I mentioned that I'll do it in my jump off to 0 dose. (ie. 0.05mg, which is when I can't get the dosage any smaller) So it'll actually be a %50 reduction where it would be %100 reduction if I were to jump to 0 from there.

 

[gladtobehere1984]

On 8/18/2019 at 2:34 PM, hayduke said:

 

Again my preferred approach is to work with a steady daily dose, but I do wonder if some of the neuroleptics, specifically olanzapine here, might be more forgiving than most of the SSRIs when used more intermittently. 

 

Hi Hayduke,

 

Hope you are well. I noticed in your signature, that you upped your dose to 2.5mg a week ago, then went down to 1.5mg a day later. Was there a specific reason for that? Did psychosis seem to come back?

 

Thank you and take care

[hayduke]

20 hours ago, gladtobehere1984 said:

 

Hi Hayduke,

 

Hope you are well. I noticed in your signature, that you upped your dose to 2.5mg a week ago, then went down to 1.5mg a day later. Was there a specific reason for that? Did psychosis seem to come back?

 

Thank you and take care

 

Thanks @gladtobere1984, hope you're doing ok too.  I don't want to crash Holly57's thread, so feel free to follow up in mine.  But briefly, as I mentioned there, it's something I've done maybe half a dozen times over the years (i.e. take a larger dose for one night) to quell symptoms flaring up rapidly.  It's been effective and settled to normal comfortably enough within a week each time I've done it. 

I've had several major stressors in the last 15 months and have to stay fit to work (ugh - there are pros and cons but I'd happily take a couple of years off to get off this crap more comfortably if I could).  I don't believe I'm experiencing psychosis.  My last set of cuts tallied around 12% over 4 weeks.  Chalk it up to impatience but also wanting to find the sensible max descent rate.  For me it's clearly <12%/mo.  You can distinguish WD symptoms from the complaint because they abate after holding for a while.

 

As happens now and again when withdrawing from these very numbing drugs, a lot of strong emotions from the past came up afresh.  Partly just the lights coming back on, and in a better set up world I could take that time to work with that instead of feeling I have to show up, act professional and look busy, but I'll just have to grieve more later when I can.

 

On the whole I am ok dealing with these emotions and am checking in with my counsellor.  I may have been fine just listening to Claire Weekes for an hour, but I was anxious that night and know that rare one-off larger dose has worked every time in the past with little fallout. 

 

Time to tune the cuts to 10% again.  A good example of the sorts of things that should prompt thinking of a hold, which is where I'm at now in the slide taper.

 

Cheers. 

[gladtobehere1984]

On 8/20/2019 at 4:13 PM, hayduke said:

Thanks @gladtobere1984, hope you're doing ok too.  I don't want to crash Holly57's thread, so feel free to follow up in mine.  But briefly, as I mentioned there, it's something I've done maybe half a dozen times over the years (i.e. take a larger dose for one night) to quell symptoms flaring up rapidly.  It's been effective and settled to normal comfortably enough within a week each time I've done it. 

Thank you Hayduke for your thorough explanation and apologies for asking a side question on your thread Holly. When I can get to it, I’ll read your thread as well Hayduke.

 

Cheers