hdmiTable: preparing to taper from Zyprexa / olanzapine

[hdmiTable]

@JohnBanes I think I would trade my Olanzapine dependency for a benzo dependency any time. My only fear regarding the aggressive taper is that some people say it's the underlying illness - an overactive dopamine system - causing the wakefulness. There's an ongoing study, the HAMLETT study which was inspired by the Wunderlink study that looks into dose reduction / discontinuation strategies in more detail. They follow the following algorithm:

• Make small reductions
• If early warning signs occur such as trouble sleeping and social withdrawal,etc. halt the reductions
• When early warning signs disappear continue the reductions
• If early warning signs become more severe, updose
• If psychotic symptoms occur the patient is reinstated on the original dose

I also refused to believe that it could be the underlying illness causing the sleep issues but it's hard to know for sure. I'm not experiencing any other early warning signs except for the sleep. My fear is that if I'm wrong I could end up relapsing and even more meds and longer time to taper.

 

A psychotic break can last a year so going faster and making large reductions is risky within that timeframe. It sucks but there's no way to be certain if it's the med that's wrong or if I'm just still in the episode with the symptoms being masked by the med. On the other hand, so many people are stuck on this pill with sleep problems when they're making reductions who have never been psychotic in their entire life. I'd be so much better off doing a rapid taper now that I've only been on it for 3 months tho. Dopamine supersensitivity also sets in after 26 weeks it would also be nice to avoid that. Also the weight gain I've read it somewhere that a 10mg dose is almost equivalent of eating 1500 calories. So I'm eating like 500-750 calories a day just to keep my weight and I don't know how much longer I can handle it. Many many reasons to get off this poison earlier the better.

 

@Hopela I've read your story and I think it's very inspiring. You could handle the insomnia and came out on the other side. I think I'm going to play it safe until sometime end of this year and then attempt a deep dive like you did. Hopefully I'll survive somehow.

 

 

[JohnBanes]

I entertain the same doubts as you do.  The insomnia could be the underlying illness, and it is common for folks with psychotic disorders to lack "insight" into our illness.  In my case, I have some reason to think the insomnia is not a symptom of my underlying disease.  First, I did not have insomnia before trying to come off antipsychotics.  Second, the most recent bout of insomnia was accompanied by telltale signs of over-sensitivity (e.g., extra sensitive genitals).  And third, my psychotic episodes were limited to delusions and I did not have hallucinations or positive symptoms or incongruent mood symptoms.  In other words, as even my doctor agrees, I am a highly unconventional psychotic:) However, my psychiatrist has pathologized my insomnia and believes it is a symptom of a mood disorder.  Perhaps he is right.  Or perhaps, it is a symptom of withdrawal and I will never successfully withdraw. 

 

Some folks on this website are fairly militant about there being no mental illness. I don't think that's true.  If someone is hallucinating or has mania, there is something wrong in the brain.  Other symptoms (e.g., depression, delusion, anxiety) may stem more from the mental level than the biological level.  But even if problems arise from biology as opposed to thinking, I just don't think psychiatry has adequate tools to deal with many forms of mental illness; that psychiatry frequently mis-diagnoses; and that medications often don't work, carry serious side-effects and/or are difficult to withdraw from, and these are risks psychiatrists don't disclose to patients ahead of recommending treatment.

 

What is most frustrating is that outside of forums like this one, the possibility that my health problems are iatrogenic is not seriously considered.  Instead, the desire to decrease meds or the view that withdrawal causes problems are rejected.  So I turn to places like here for validation, and feel alienated from real world supports.  And at the same time, some of the stuff I read on this website raises serious concerns about some of the participants.

 

I saw the HAMLETT study, and I am glad it's ongoing. But it only looks at patients with one episode of psychosis, which makes its results harder to interpret in cases like mine (I've had two).  The study proposal also mischaracterizes the findings from Hui et al.  The Hui et al paper is one of the few pieces of research on long term effects of antipsychotic discontinuation, and as the HAMLETT proposal explains, the study does find "a higher risk of poor clinical outcome in the discontinuation group compared to the maintenance group (respectively 39% versus 21%) [where] [p]oor clinical outcome was defined by persistent positive symptoms of psychosis, treatment-resistant psychosis, or death by suicide."  However, on quality of life measures, the Hui study consistently finds better results in the discontinuation group than in the treatment group.  This is something the psychiatric literature does not draw attention to, even while the study continues to be one of the core empirical bases for continuing long-term antipsychotic treatment.

 

One of the nice things about the HAMLETT proposal is it so clearly explains the side-effects from antipsychotics that are most troubling to me (forgive the long quote):

 

Quote

"In the context of functional recovery, the impact of (dis)continuation on emotional and cognitive functioning needs to be evaluated. Blockade of the dopamine D2 receptors, the main mediator of efficacy of antipsychotic medication, can produce adverse subjective experiences or neuroleptic dysphoria, encompassing a variety of unpleasant subjective changes in arousal, mood, thinking, and motivation. Severity of these mental adverse effects depends on individual variability of sensitivity and proportion of D2 receptors blocked. Individuals with lower baseline dopamine function are at increased risk for dysphoric responses during treatment with dopaminergic blocking drugs. With regard to dosage of antipsychotic medication, most mental adverse effects occur at D2 receptor occupancy higher than 65–70%. In addition to dysphoria, dopamine blockade may reduce functioning by exerting negative effects on cognition. Dopamine plays an important role in learning and motivation, as it enables associative learning, especially of aversive stimuli. Approximately 50% of men and up to 70% of women report difficulty in concentrating or tiredness with the use of antipsychotic medication. Blockade of this system reduces the cognitive capacity to learn new associations, which may hinder study or work. Blockade of the mesolimbic reward system also reduces motivation and drive, which can be expected to hamper professional and social success."

 

For anyone reading this and not familiar with the proposal, its full text can be found here: https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-019-3822-5.  Again, I think this forum does an excellent job but could be even better if it allowed posting of attachments above the 315.47kb limit so users could exchange medical literature.         

[Hopela]

4 hours ago, JohnBanes said:

I entertain the same doubts as you do.  The insomnia could be the underlying illness

I did so too when finding I couldn't sleep. Then I went back to high doses of Olanzapine that put me out 12 hours at a time prior to cold turkeying but I still didn't sleep, so that is proof that it was the drug withdrawal, and it's knock on effects on my nervous system, causing insomnia.

 

Based on the 3 datapoints you provide I think you have no good reason to continue entertaining the idea that you all of a sudden and just at the time you withdrew developed a "causating mood disorder" in such a way that this special mood causing you symptoms in itsef was not caused by withdrawal, and it only causes symptoms that amongst others are associated with withdrawal and in such a way that withdrawal can not also be a cause for symptoms simultaneously. No you and your mood disorder is to blame for the symptoms, settled without further inquiry by authority of the person in butcher coat.

 

I think we should be careful about entertaining notions of underlying illnessess since many have been damaged by such lies.

 

 

 

[hdmiTable]

In the HAMLETT study what they do is when someone gets psychotic symptoms they reinstate the original dose. I guess I could do the same given that I'll have insight. @Hopela were you functional / able to work while tapering? I just started a new job and I would want to keep it if possible.

[hdmiTable]

@JohnBanes It's only anecdotal but I spoke to a few people on reddit who've had multiple episodes and they recovered. I also think the scientific community and researchers have just started to realise that many recurrences are iatrogenic and that's why we are now having studies like the Horowitz and the Hamlett study for example. Because these are so recent and also psychiatrists in general are not bothered to follow research it will take some time until it becomes common knowledge. Until then I'm sure many people will be falsely diagnosed with bipolar and other disorders unfortunately.

[JohnBanes]

I agree.  The problem is that some folks that had psychosis recover and don't need medication.  But psychiatry is bad at predicting who these will be and instead prescribes antipsychotics to everyone that has psychosis, regardless of whether (a) the antipsychotics work for the given patient, and (b) the side-effects of the antipsychotic.  I don't have much hope for the Hamlett study or Horowitz's work.  First, the Hamlett study will take a while to complete.  And second, these efforts are still seen as part of the professional counter-culture.  However, if they generate evidence in favor of reduction or discontinuation, that will have to affect the conversation somewhat and I guess that's an improvement if not itself salvation.  

 

I'll keep my fingers crossed for you...

 

And by the way, your posts come across well-written and thoughtful.  I think your head is in a good place.  And it's particularly impressive b/c it appears that you are writing from Budapest, where English is not native.

[hdmiTable]

Many thanks @JohnBanes. I used to live on the south coast of England for 7 years (prior to my psychosis). I've brought this upon myself by smoking weed everyday. I wish I had known that this can happen but it's extremely rare. I am hoping I can avoid future relapses by staying away from alcohol, coffee and other mind altering substances in the future. I saw many examples of people quitting their meds and never getting ill again.

 

I have a feeling you've read it already but The case against antipsychotics by Whitaker is a good one. He argues that before these meds were invented about two-third of people got better and never fell ill again. I think people should be given a chance to recover on their own first and meds should only be used as a last resort or if used then used acutely. Being on antipsychotic medication is the worst experience in my life. Coming off will be probably much much worse. I'll keep my fingers crossed for you as well 🤞 hopefully you'll have a much easier time tapering.

 

 

[hdmiTable]

Update: I've made a cut yesterday to 5.5mg. Sleep was very broken but not as bad as I expected. I'm surprised that I was able to sleep at all so today I'm going to dissolve the Olanzapine in pure DMSO without adding isotonic saline solution to dilute it. I'm a bit suspicious that I'm not cutting by the amount I'm thinking I'm cutting by.

 

It could also be the melatonin that helps me sleep. I'm taking 5mg 3 hours before bed and am going to increase it to 12mg in a week or two. I'm also going to order some CBD capsules 20% 2000mg or 30% 3000mg (haven't decided yet which one because it's expensive) to support my more aggresive taper. It's mixed with olive oil which contains some necessary amino acids too. So far no other withdrawal symptoms apart from the jittery sleep. I will also get some magnesium glycinate because the ones I'm having now are citrate. 

[Shep]

Quote

Jul 25 - 6.8mg | Jul 31 - 5.5mg

 

This is from your signature. Going from 5.5 mg to 6.8 mg is a 19.12% decrease. 

 

17 minutes ago, hdmiTable said:

It could also be the melatonin that helps me sleep. I'm taking 5mg 3 hours before bed and am going to increase it to 12mg in a week or two. I'm also going to order some CBD capsules 20% 2000mg or 30% 3000mg (haven't decided yet which one because it's expensive) to support my more aggresive taper.

 

This is extremely reckless. 

 

I wish you well, hdmiTable, but it looks like you may need to learn to respect the power of the neuroleptic the hard way. 

 

It's unfortunate because you had stabilized so much that you might have been able to slowly walk off this drug without many complications. Many of us wish we'd had that opportunity. 

[hdmiTable]

@Shep I know it's probably a really dumb thing to do. I've read the horror stories online so I know roughly what I'm up against. I fear the insomnia and the suicidal depression the most among the many withdrawal symptoms.

[Shep]

20 hours ago, hdmiTable said:

I've read the horror stories online so I know roughly what I'm up against.

 

You've read the horror stories of people who didn't get themselves caught back up in the psychiatric system with forced "treatment." So what's online isn't the worst of the worst. 

 

20 hours ago, hdmiTable said:

I fear the insomnia and the suicidal depression the most among the many withdrawal symptoms.

 

Don't forget the cognitive impairment from the insomnia, which often leads to unemployment, followed by a cascade of collateral damage from not having an income, not being able to take care of your basic hygiene, not being able to write out your bills or find the local grocery store, etc. It can also be very difficult to swallow food due to withdrawal symptoms like dysphagia. And this can last for years. 

 

It's also likely that once your nervous system is destabilized from these rapid reductions, the supplements you're loading up on will turn paradoxical. A damaged nervous system doesn't tolerate many supplements and you may also become sensitive to foods high in histamine, etc. 

 

See this post for more:

 

CT and Fast Tapers

 

We've given you all the information we can from our experience of what works and what will cause big problems. What you do with that information is entirely up to you. We can't help those who don't want to be helped. We have plenty of members who have gone this route and have deeply regretted it. Once the damage is done it's extremely hard to stabilize and regain control and can add painful years to your recovery. If that's the course you wish to take, well, it's your decision.

 

Please note that we have a very limited staff of volunteers and a number of members waiting to have their accounts approved. It's unlikely we'll be able to help you should you cause your nervous system to crash. 

 

The best prevention of a severe withdrawal is a slow taper. We don't know of any shortcuts. 

[hdmiTable]

I may come across as very negative here but I have a feeling I'm going to be one of those people who got permanently damaged by this drug. I held at 6.9mg for 3 weeks and I've not seen any improvement whatsoever in regards to sleep. I was sleeping 9-10 hours but I've had multiple awakenings. Sometimes I thought it's getting better as I've only woken up twice but then the next night I would've woken up 4-5 times.

 

I want to see some neuroplasticity but it just isn't happening. I'm going to try some excercise this afternoon and hope that in the next couple of days there will be improvements, proof of neuroplasticity and my brain adapting. If not I'm afraid it doesn't matter if I microtaper slowly into insomnia or tackle it head on. Sadly some people are genetically predisposed to Zyprexa brain athrophy. I hope that's not the case with me but so far it seems like it is.

[NNhope]

When full withdrawal hits, it will be intolerable. I had a glimpse of it when I CT for 4 days. After reinstatement it took 3 to 4 weeks before I felt OK and now 3 months out I'm still feeling it. Since you are not there yet you should consider a slow taper. Even if insomnia doesn't improve alot you can at least prevent other more serious symptoms.

[hdmiTable]

Thanks @NNhope. That's what I will try to do from now; try and avoid the rest of the WD symptoms. I hope you recover soon. 

[NNhope]

Thank you, I just switched to all liquid and will hold for a month before I make any cut. I want to make sure I stay functional.

[hdmiTable]

Update: It's been a week since I've dropped to 5.5mg and I've thought it's time to write an update. So far it hasn't been that bad I've had terrible sleep in the first two days then on the third day I took 1mg Xanax for some relief. I've slept about 6-7 hours and from the day after I was able to consistently sleep between 6-10 hours naturally. Now I'm having the same problem that I had on higher doses which is waking up multiple times throughout the night.

 

I have no clue why this keeps happening. It could be cholinergic withdrawal, histaminic withdrawal, too much cortisol, too much melatonin, brain damage or something else I really don't know and there seems to be very little research on the subject so it will be hard to figure it out on my own. I've read somewhere that too much melatonin can cause this so I'm going to try taking 6mg of melatonin instead of 12 to see if that resolves the issue. I've also ordered 240 CBD capsules each containing 50mg of pure CBD so if it is a cortisol issue hopefully that will resolve it but I'm still waiting for the parcel to arrive.

 

I was hoping the drop would bring some relief for the anhedonia I'm experiencing but I don't feel any improvement whatsoever. For now the most important thing is that I'm sleeping relatively well especially if we consider the amount I dropped by. I feel rested and no signs or symptoms of sleep deprivation yet.

[JohnBanes]

I am glad to hear sleep is okay.  The mood will lift with time.  Remember that olanzapine includes a mood stabilizer, so withdrawal requires your brain to readjust.  When you are tapering olanzapine, you are sadly tapering much more than just an anti-psychotic. 

[hdmiTable]

Thank you @JohnBanes

 

Olanzapine is doing way more than any med ever should. It's controlling even the most basic things like my appetite, sleep patterns, heartbeat and I'm sure there's many more things which I don't know about. It is a little bit like the ring in Lord of the Rings. The most evil of all pills. I think of myself as Frodo who is trying to get to that volcano to destroy it. The psychiatrists are the orcs. It's a rough journey but I'll eventually get there. Once I'm back to normal the first thing I'm going to do is watch the trilogy. I don't know how long it's going to take but one day it will happen. I'm trying to stay positive.

[JohnBanes]

I look forward to the day when you are feeling better.  I think we will both improve, but it will take time.  

 

It's not fair that we have to struggle with this while others get to go on living healthy lives, trusting their doctors as we did.  I hope we can find some strength and reward in this tragic experience.

[hdmiTable]

It will be worth the struggle. I believe the day will come when everything returns to normal. It will be probably one of the most magical moment in our lives. I personally miss music and watching movies the most. Once I can enjoy those things again I can start healing from this trauma.

[hdmiTable]

Update: I'm on day 5 on 4.5mg. The first two nights were rough but I've slept and the last 2 nights were okay. Yesterday I've slept well. On the second day I think I've experienced a mood swing or neuro emotions. Today I've been in a low mood also. I kept getting caught up in negative thinking patterns. I wonder a lot if it's too late to rebuild and I don't know how I will cope with life without smoking marijuana. I'm also afraid that I will be stuck in this depressed mood once I come off. It's weird because a few days ago I was so positive about my life and where I will be able to get. I guess I'll never know unless I try huh. My memories are starting to come back and it's making things more difficult. I feel like I have been turned off like a machine that's now booting back online and maybe it's a bit too much.

 

Anyway. I've added magnesium glycinate to my supplements and tried it last night. It relaxed and calmed me. Two more nights and if things stay the same I'll lower my dose 3.7mg.

[Nicjk]

On 8/12/2021 at 8:59 PM, hdmiTable said:

Update: I'm on day 5 on 4.5mg. The first two nights were rough but I've slept and the last 2 nights were okay. Yesterday I've slept well. On the second day I think I've experienced a mood swing or neuro emotions. Today I've been in a low mood also. I kept getting caught up in negative thinking patterns. I wonder a lot if it's too late to rebuild and I don't know how I will cope with life without smoking marijuana. I'm also afraid that I will be stuck in this depressed mood once I come off. It's weird because a few days ago I was so positive about my life and where I will be able to get. I guess I'll never know unless I try huh. My memories are starting to come back and it's making things more difficult. I feel like I have been turned off like a machine that's now booting back online and maybe it's a bit too much.

 

Anyway. I've added magnesium glycinate to my supplements and tried it last night. It relaxed and calmed me. Two more nights and if things stay the same I'll lower my dose 3.7mg.

Hi @hdmiTable just wondering how you're doing now? How is your sleep and where are you with your olanzapine taper?

[hdmiTable]

On 2/24/2022 at 5:05 AM, Nicjk said:

Hi @hdmiTable just wondering how you're doing now? How is your sleep and where are you with your olanzapine taper?

 

Hi Nicjk 

 

Thanks for asking. I've been off Zyprexa since February this year. 

 

Sleep is good but my circadian rythm is a bit messed up. I can't seem to go to bed at the same time everyday my sleeping hours just keep shifting. That's related to melatonin and I also have issues with testosterone and probably some other hormonal dysfunction too. When I sleep it's usually 7-9 hours and it's proper restful sleep. I'm not forcing myself to wake up at the same time every morning atm though which would probably help. 

 

I also noticed that my body is not able to absorb certain nutrients and vitamins. I had to get a prescription for high doses of vitamin A and I suspect I will need B12 vitamin shots too. 

 

Apart from this no lingering withdrawal symptoms. I had these weird depressive episodes for a while afterwards and ringing in ears this kind of stuff but I think my brain has recovered it really is just my metabolism that seems a bit off and the hormonal stuff. Trying to identiy the problems one by one and working on them. I jumped off at 0.2mg went quite fast at the end but just couldn't stand taking this dogsh*t drug any longer.