GenesisFan: olanzapine taper preparation

[GenesisFan]

Hi everyone,

 

My history of medications is quite a lot and I don't know when I've started each one in the past precisely. I'll try to give a full story, but it might be very long. In short I have been started on several drugs, at first believing that they might actually help, as I was young and naive. In hindsight I think they caused what they were supposed to prevent. Now I don't believe they are helping me anymore. Currently I am on only the olanzapine and it is making me feel almost nothing, sometimes a very dampened emotion is still coming through (especially sadness, crying spells) and I feel my creativity has left me a long time ago. Also I still play music, but do not enjoy it anymore, as with every other activity, I can do it, but not enjoy it. This is for me the most important reason to come off the olanzapine and stay off other antipsychotics. They don't heal anything, they just make you feel terrible.

 

Now:

The most current situation is that I'm only using olanzapine now, 5 mg. I recently tried to taper off of it with help of a pharmacy's custom made doses. They have small dosage reductions every day, but it was still too fast for me. Had no real issues getting from 5mg to 2,5 mg over 28 days. But in the process of getting from 2,5 mg to 1 mg in 28 days, it was too much, too fast. At around 1,8 I started to have real trouble sleeping, but I accounted it to stress, not to the taper. Then a week later, I was at 1,4 mg and of course the insomnia had only gotten worse. Also the for me typical of withdrawal burning headache had entered the scene. I simply could not endure this and in despair I upped my dose of olanzapine to 15 mg for one night (this was may 13th 2021) . It was way too much, as I felt very drugged throughout next day, but at least I could sleep for 5-6 hours after a week with possibly no sleep at all. The next night I used 10 mg, and sleep was better, also the next day was better (not feeling drugged). From next night on I have been using 5 mg stable again, and have been able to sleep some 5-6 hours a night again.

 

History:

Over the years I've been on all sorts of medications and I have been involuntarily hospitalized 3 times. I was looking through my files and found those admissions were in 2008/2009, 2015 and 2017. My entire drug history I can't possibly recall accurately, but I can sketch a picture.

 

When I was around 16 years old I was feeling depressed. I went to my GP, who sent me through to a psychiatrist and I was started on effexor to treat the depression. Nothing improved for quite a while. I was living on my own (sent away from home at age 15) and had trouble going to school. I did not finish the school I was at, since I had to repeat the same year twice - which as a rule meant you could not finish school there. During that I had my first relationship,  which lasted for about 6 months and then ended. This was my first real stressful situation while living alone. I became manic and I ended up being admitted to a psychiatric hospital for a few weeks. Then came the diagnosis I had bipolar disorder. Quite a lot of medication was added since then. Mainly benzo's to help with sleep, which I also had trouble with, and the 'magic bullet' lithium for mood stabilizing. The doses of the benzo's I don't remember, but I've been on lorazepam, temazepam, oxazepam, diazepam and flurazepam. The lithium was 1200 mg daily.

 

I didn't like how I felt when using lithium and in 2015 I stopped taking it. Depressions would still take place while I took lithium. But when I stopped lithium CT, I quickly became manic (as I now know has a high chance of happening when you stop taking it abruptly) and became hospitalized again. In the hospital I don't know what they gave me exactly, but I know it was a cocktail. I've been in a drooling zombie-state, under a cocoon of medications. I couldn't even talk normally. When I was in the hospital I became psychotic too and I have been started on olanzapine. I don't know if I've used it before then, but I remember that I could only leave the hospital under conditions I would take 20 mg olanzapine daily, 1200 mg lithium daily and 1000 mg depakote twice daily. After I left the hospital I guess the olanzapine was lowered to 5 mg eventually, but the lithium remained unchanged, as did the depakote. In 2017 I again did not want to stay on the medications and again CT'd all meds. I became manic again and hospitalized once more. I read in my files they gave me cisordinol injections every other day until I accepted to take olanzapine again. Three months later I could leave the hospital again, with similar conditions. Using 20 mg olanzapine daily, 1200 mg lithium daily and 1000 mg depakote twice daily. Both those hospitalizations were horrific periods to look back at.

 

Since being released in 2017 I have been stopping the lithium in consultation with my psychiatrist (don't know which year). I did not end up becoming manic or psychotic then. I was still on olanzapine, I think it was a dose of 10-15 mg. I didn't always take it as prescribed. There was a period in 2018 I had the freedom to take it as I saw fit and then I took 15 mg every 3-4 days to sleep well for a night and  I had a hypomanic period that lasted maybe 2 months. I think I might have been taking the depakote daily still (I took 2000 mg every day in one dose instead of 1000 mg twice daily - doctor said that didn't matter too much). The depakote didn't affect me much at all, but the olanzapine continued and was/is hard to get off of. Somewhere in 2020 I could stop the depakote too in consultation with my psychiatrist. This gave no problems. But stopping olanzapine on my own or in consultation remained too difficult. Always after at most 2 weeks of taking a 'final' dose withdrawal signs would emerge: a burning headache and inability to sleep at all. In the meantime I had been switching over to cariprazine (brand name Reagila) with no apparent improvement. I still would need olanzapine occasionaly to be able to sleep. What I noticed is however that it hit harder at lower doses, possibly because the cariprazine influences some of the same parts in the brain. 

 

Early 2021 I consulted with my psychiatrist that I wanted to stop the olanzapine, but worried about being able to sleep. My psychiatrist was suggesting I try mirtazapine instead of olanzapine, as it would help me sleep supposedly without the downsides of olanzapine. I tried this, even though I was wary to try new things. The effects of the mirtazapine were terrible. I lost all my libido and the connection to my feelings felt even worse than on olanzapine. I stopped taking the drug after only 4 days, but still got two quite heavy weeks of withdrawal. I was also not using olanzapine at this time. Flu like symptoms, hot/cold, sweating, vomiting. This lasted for about 2 weeks and then suddenly ended. Then I had a window of a few hours, late afternoon until early evening, where I felt the best I've ever felt in a long time. It wasn't manic, but it was something close to not being drugged. Later that same evening however I recognized the burning headache feeling that for me signals withdrawal from olanzapine. I took olanzapine again and talked to my psychiatrist about how to come off this again. At first he and I were suggesting we'd stop by going to a 5 mg dose for 6 weeks, then going to 2,5 mg for 6 weeks, and then 2,5 mg every other day for 6 weeks before stopping completely. At first I thought this would be a good plan, but I started to doubt that drops of 50% would give too much chance of withdrawal. I found a pharmacy that could help to taper off by reducing the dose daily as in the Now section above. Unfortunately this didn't work, it was way too fast i the end, which does make sense, but I didn't know that when I started to taper. I was hopeful to be off the medication in 16 weeks of daily dose reduction (5mg to 2,5 mg to 1 mg to 0,5 mg to 0 in steps of 4 weeks each). This didn't work and is still quite expensive too (more than 100 euro per 4 weeks, while the normal medication costs around 10 euro per month).

 

Future plan:

I have been searching the web for advice on how to taper and found this site to be the best source of information. I realize I should do a much longer taper that could last up to 3 years, depending on what the 'jumping off' point would be. Reducing at most 10% per tapering step and staying on that step for at least a month, maybe longer depending on how my body reacts.

 

For now I want to stay on 5 mg for a few months at least, to stabilize and get at least some sleep again. In this time I want to gather the information and equipment needed to do a succesful taper. Which could take several years, I'm aware.

 

On the methods I saw used for tapering olanzapine specifically at first I was more in favor of measuring by mgpw on a scale, but I can't imagine that would be precise enough. The pills are so tiny and cutting them in quarters even (at least the auropbindo I've got now, maybe the sandoz are a bit easier) is almost impossible. Crushing and weighing would not be precise enough from the start or soon after. So that leaves the dissolving a 5 mg orodispersible tablet in some amount of water (maybe 20 ml to begin with) and removing part of that mixture with a pipette/syringe. I was/am worried that I won't be able to mix the water and olanzapine consistently and remove the same or close enough to the same amount of olanzapine from the mixture each time.

 

Is there anyone here who has done this with olanzapine or another drug who could reassure me this won't be as hard as I make it up to be in my mind?

 

 

 

 

I understand my medications history part is not as clear as it perhaps could be, but for me parts of it are a long time ago and I don't remember everything well. Also I don't have notes I can review to come to an exact overview.

 

Thank you to anyone who reads this. If you have any advice/assurance you can give concerning the taper, I appreciate it tremendously.

 

Love and healing to all of you,

GenesisFan

 

[Altostrata]

Welcome, @GenesisFan

 

Yes, with your long history of adverse drug effects, you would be wise to stabilize and taper later. 

 

Did you use tapering strips to taper?

[GenesisFan]

Hello Altostrata,

 

Thanks for your reply. I will post updates on my taper when I start, but that will at its soonest be in August. For now I'm stable on 5 mg of olanzapine daily. Ability to sleep has returned, but that's about the only positive thing to say about the medication. I hope to be able to get fully off the olanzapine in a few years.

 

To prepare I did get some oral syringes from the pharmacy for free (a 10 ml and a 20 ml syringe), but they've only got marks at the whole ml parts.

Also the orodispersible tablets weren't covered by insurance anymore, so I had to pay for them myself. They cost around 15 euro for 4 weeks, which is far less than using tapering strips, which can cost north of 100 euro for 4 weeks, depending on dosage. The former I can afford, the latter I cannot.

 

I plan to take 40 mls of water with the 20 ml syringe and 'dissolve' the orodispersible tablet in it. Then I'd stir and remove at first 4 ml of the suspension with the 10 ml syringe. Following the 10% rule I'd planned to go to in the following steps 36/40 ml, 33/40 ml, 30/40 ml, 27/40 ml, 25/40 ml, 23/40 ml, 21/40 ml 19/40 ml. After that I'd reduce by 1 ml each step up till 9/40 ml. How I'd best continue from there I'm not sure yet. Perhaps I can find a smaller syringe with more markings on it for the last steps. If no problems arise I would keep the steps up for 4 weeks, if I do notice problems I'd take longer.

 

If anyone can offer any advice or tips on the process, they would be most welcome.

 

Yes, for the taper that went too fast I used tapering strips.

 

 

 

[Altostrata]

See Tips for tapering off olanzapine (Zyprexa)

 

Please let us know how you're doing.

[hayduke]

Hi @GenesisFan,

 

It's taken me a few years but I'm getting there.  Feel free to have a look at the graph of my taper in my sig for an idea of the rate I've found sustainable though sometimes challenging.

 

That quick taper you describe sounds gruelling - 5 to 2.5mg in a month is a real crash dive.  Your body would still have been trying to cope with that, then the next cuts would've really piled it on.

 

5mg isn't the worst place to start from, when you're ready.

 

I use the liquid suspension method Rhi describes in the link Alto just gave you.  It works fine for me.  Since I got an adjustable pipette, it's now almost a trivial process most nights.

 

Cheers

[GenesisFan]

Hi all,

 

I've got some disappointing experiences to share. Around August I tried a taper with the 10% reduction every 4 weeks in mind. At first all seemed to go well, yet caution made me take a few weeks longer than 4 weeks before making another 10% cut. For a while still, withdrawal symptoms remained absent, until around when I made the third 10% cut. Suddenly I had excruciatiung insomnia, which is actually the only withdrawal symptom I've encountered that I simply cannot endure for a long period of time. If it were only an occasional night of bad sleep, sure, but not being able to sleep for an ongoing period makes me desparate, on edge and simply unable to function, even if not much is expected of me, because I don't work or study anymore.

I ended up calling the mental health services' crises services during the night, who couldn't do anything - this was halfway November. The next day I contacted my regular mental health providers and my psychiatrist's replacement (because he was on holiday leave) prescribed me lorazepam as a quick fix. I decided myself, without seeing my psychiatrist, to give up the taper completely at that time, since I did not see me being able to keep up with the withdrawal symptoms for years yet. As I would have needed at least three more years with the 10% reduction per 4 weeks schedule before I would have been at a dose low enough to consider jumping off safely.

 

The second failed attempt to taper my olanzapine in a year made me doubt if I ever could come off this poison. For a while I simply accepted I would have to keep using it for the rest of my life. Only now, around two months later, do I dare to start thinking about considering another tapering attempt somewhere in the future. I am currently back at a dose of 5 mg daily. It's just enough to be able to sleep - if I forget a dose, even for a few hours sometimes, I feel overstimulated/on edge and unable to sleep. I don't know if I should wait longer to start a new taper or simply taper a lot slower by either a smaller dosage reduction or an increase in time between reduction steps. What I've learned from the last two tapers is that they both were too fast to keep the withdrawal symtpoms, in particular the insomnia, bearable.

 

A problem I encounter also is that friends/family have such high regard for psychiatrists and their medical counsel about how to stop taking my drugs, while I find their advice lacking (common) sense. They (generalizing here) all seem to think it comes down to pliable maths, completely disregarding the experiences of my tapers. Some of their advice comes down to reducing by 50% after some arbitrary length of time, let's say 6 weeks. This probably stemming form the fact that 5 mg pills exist and 2,5 mg pills exist, but nothing in between or smaller. Then they advice to start skipping days between the 2,5 mg doses, since no way that can severely impact the brain... It all seems to come down to elementary school maths, because after that comes, surprise, skipping two days between doses etc. The fact that they don't have firsthand experience of the poisons they prescribe and their effects makes them seem uncaring too. My psychiatrist also says it's impossible to be dependent on the drug, which is something I completely disagree on. It doesn't matter to me that he says there's no research to show dependence. That's wrong in two ways. The first being any actual research on these drugs being done that would be done with care for patients in mind instead of pharma companies. The second being my experiences being disregarded. Am I making these experiences up, am I being called a liar, does it have to be researched before it can be allowed to be real? It's hard to have conversations with friends or family members about the topic when they don't understand how hard it is to stop these medications and have some - for me unexplainably high - opnion of the necessity for medical advice of psychiatrists and its quality. Some friends and family members also seem to think that insulin fixes diabetes type I and my problems, whatever they may be, are therefor ifxed by olanzapine, or whatever drugs I get prescribed.

 

It's difficult to find meaning and motivation to keep on living when every day, week, month and year seems to be mainly surviving despite the drug effects. Something I value greatly is being able to feel emotions. This is something that is greatly diminished by the olanzapine. Playing and listening to music is far from as rewarding as it was before prescription drugs took over my life. These drugs have effects on many aspects of living and frankly I have judged at times this suffering not to be worth living on any more. I am still hopeful that things can get better, but I also fear that I am fooling myself with hopeful illusions.

 

Getting up in the mornings is hard on olanzapine. Staying up and finding motivation to work towards goals I set myself is harder still. Taking the stuff while you hate what it's doing to you is a hard and daily reminder of how f*cked up things have become. If I could go back in time and change one thing, I would have avoided psychiatrists like the plague. They seem to be the authorities on these dangerous drugs (although they themselves greatly twist the balance between positive and negative effects they cause). Being naive and young even makes you believe there's indeed something wrong with you and that they can fix it with some miracle drug. Years down the road when you've experienced enough downsides, which they as it happens never told you about beforehand, it seems all but impossible to stop taking the drugs. And if you disregulate yourself by trying to go cold turkey, you get committed to a mental health hospital and given higher dosages of the same drugs that have been the problems in the past, but now you're not even taken seriously anymore, since you're manic/psychotic and as such have no rights.

 

 

I guess I am doubtful if I can ever get off my olanzapine completely. At the same time I think I have no other choice than to get off it and salvage my remaining years' quality of life as much as possible. I'm only 33 and I feel victimized by the system. All sorts of negative ideas about humanity and society stem from this trauma. How do I get past this and heal myself? I don't know what to do anymore. Thank you for reading all the way through and if you have any advice or support thanks in advance for that too.

[hayduke]

Sorry to hear you've hard a hard time with your taper @GenesisFan

 

Two things jump out - first, in January last year, you were on 10mg olanzapine - then 2.5mg by May, and 1mg in June - then back to 5mg after that.  And then the year before that, you had drug changes.

So yes, you tapered way too fast as you know, last year.  If you map out your cuts on a graph, and superimpose a 10% of prev. dose/month taper on that same graph, you'll see that you asked a great deal of your body, and apparently more than it will keep up with.

So while 5mg sounds like a sensible place to hold, given that you started the year on 10mg, your body will still be processing all the other excursions.  I would want to stay steady on the 5mg for a longer period if I was in your shoes.

 

2 hours ago, GenesisFan said:

I don't know if I should wait longer to start a new taper or simply taper a lot slower by either a smaller dosage reduction or an increase in time between reduction steps.

 

Both, probably.  Certainly the former.

 

As to the latter, have a look at 

 

as it is a lot gentler.  

 

You will want to get better at reading what your body tells you after each cut, and learning to hold until any symptoms resolve - for me <6hrs sleep for two nights in a row meant I would hold until it improved.  If akathisia, or anxiety, or irritability, or derealisation were too much after a cut...hold.  Stressful life events in progress...hold.  Someone wise here once said "any reason you can think of to hold is a good one". 

 

Yes, it does take time - at least a few years in my case.  We are well into the realm of least worst options here, but we obviously weren't given an ideal starting point with these prescriptions.  While it is often quite uncomfortable, it does get better as you go, and eventually you get clear of the drug.  

 

You might also find therapy helpful given your past diagnosis.  Underlying issues tend to be unmasked and even exacerbated by these withdrawals.  I can relate to your difficulty with your family difficulties from my own experience.  You will do much better with a supportive advocate instead of a drug wielding enforcer who just takes their word for everything and disregards your input and needs.  I found certain clinical psychologists invaluable for that kind of assistance, especially trauma informed.

 

If you cannot get through to your psychiatrist, I would find another who does understand your plight.  I would see how your present prescriber reacts to this paper https://markhorowitz.org/wp-content/uploads/2021/04/sbab017.pdf - blurb on it at https://psychnews.psychiatryonline.org/doi/10.1176/appi.pn.2021.9.12 and plan from there.

 

I would plan to hold at 5mg until I have supportive health care in place and enough time for your body to catch up with the last couple of years worth of drug changes, then start planning a slow taper with them (see Brass Monkey above) when you are ready.

[GenesisFan]

Thank you @hayduke for your response.

 

I understand the need to wait with starting a new taper and holding at 5 mg for now. On the one side what's a few more months in the grand scheme of things? On the other hand I can't wait to be off this poison, rather yesterday than tomorrow. Sense needs to rule though.

 

How long a period of holding on 5 mg before trying a new taper (possibly a version of brassmonkey's slide method) would you suggest? Do I take a few months, or an entire year or even longer before attempting to come off olanzapine completely, hopefully succesfully?

 

I think my mental health care providers are making a shift/transition into trying to understand my situation, it'll just take a while and a lot of talking with them. In principle they're willing to help, they just seem completely inadequately informed on the subject. I'll definitely show him the Horowitz paper.

 

I draw some strength and hope from knowing you've succesfully tapered olanzapine to 0 mg. I'll have to read up on your method and process in your thread. Seeing as money is a very limited resource for me and our national compounding pharmacy that makes custom dosage charges around 130 euro per month (which I cannot pay and is not covered by insurance), I most likely will have to find a more affordable way of getting the dosages right. If I recall correctly you used a liquid suspension of olanzapine in water and pipettes/syringes to adjust the dose. That's what I tried as well, although I'm still not very confident that such a suspension distributes the olanzapine well enough for the method to work consistently well. Could you send me a link to the post where you describe your method and process and/or where you got the relevant information from?

Again, thank you for your response and I wish you remain free from harm and enjoy life's gifts. Maybe I'll be where you are now, some day in the future.

[hayduke]

37 minutes ago, GenesisFan said:

How long a period of holding on 5 mg before trying a new taper (possibly a version of brassmonkey's slide method) would you suggest? Do I take a few months, or an entire year or even longer before attempting to come off olanzapine completely, hopefully succesfully?

 

It could be a year or so.  Maybe at 6 months you could try a gentle 2.5% cut then and see how you go.  The smaller nibbles using the Brass Monkey slide taper should give you more margin for spotting when you need to hold.  3 months obviously wasn't enough at the moment.

[hayduke]

 

42 minutes ago, GenesisFan said:

I most likely will have to find a more affordable way of getting the dosages right. If I recall correctly you used a liquid suspension of olanzapine in water and pipettes/syringes to adjust the dose. That's what I tried as well, although I'm still not very confident that such a suspension distributes the olanzapine well enough for the method to work consistently well. Could you send me a link to the post where you describe your method and process and/or where you got the relevant information from?

 

As above.  I'm confident many people can safely get off this drug eventually being methodical, prepared and patient.  

 

Cheers