JohnBanes: Tapering Off Latuda Slowly (w/bad insomnia from Olanzapine withdrawal)

[JohnBanes]

I developed paranoia in 2014-15 related to negative experiences at work.  I was put on risperidone.  It made me very sedated.  For a long time, I did not realize the sedation was because of the drug.  Then I discontinued the drug, and had a psychotic episode in 2016.  The psychotic episode involved delusions and no other symptoms (other than negative symptoms due to the distraction and destabilization of delusions).  During the psychotic episode, I lost my job and then was hospitalized.  I was put on Latuda, but myself discontinued the treatment.  There was something like remission, at least in functionality, although the delusions were never challenged and never resolved. 

 

My career got back on track in 2017, although my marriage was scarred by the first episode.

 

The delusions came back in the Spring of 2020 after I had COVID19. I was put on Olanzapine and Fluoxetine.  Because of sedation, I went off the drugs about two weeks after starting.  I had severe insomnia, which magnified the delusions.  This was my second episode.  I was hospitalized again.  I took Olanzapine (15mg) and the insomnia resolved.  I was also prescribed Lithium.  Later, I would realize that severe insomnia is the result of Olanzapine withdrawal for me.  I retained my job but my wife divorced me, taking away our five year old son, in the summer of 2020.  I am a professor, and I taught for a semester in the Fall of 2020.  During the Fall of 2020, the delusions resolved through conversation with my sister.  I feel that I have insight and that delusions are a mental process from which I now am largely protected, and which is not truly addressed through medication.

 

I withdrew from Lithium during the Fall of 2020, and tried to withdraw from Olanzapine -- but could not without severe insomnia returning.  I went on disability in the winter of 2021 and with the help of a psychiatrist and Ativan, cross-titrated from Olanzapine to Latuda between late December 2020 and early April 2021.  Over the course of that time, the insomnia got better but far from resolved.  Slowly, I came off the Ativan between December and early April.  In late April 2021, I attempted to withdraw from Latuda (40mg).  Latuda was causing cognitive side effects, which are my primary concern as they interfere with my line of work, as well as sexual dysfunction.  Although I had no trouble withdrawing from Latuda in 2016, I had severe insomnia when I tried to withdraw in 2021.  I believe that Olanzapine withdrawal has had long term adverse consequences for my sleep regulation.  My psychiatrist was against the discontinuation of Latuda and when I told him about my discontinuation and the severe insomnia, he advised me to go up to Latuda 60mg.  I have gone up to Latuda 40mg and the insomnia is slowly resolving, again, with support from nightly Ativan at decreasing doses to increase sleep.  

 

The discontinuation and resumption of Latuda has been a painful learning experience.  I had been off Latuda for about three weeks before the insomnia became severe and was off Latuda for a total of about a month.  During the first three weeks of discontinuation, I felt sharper and my sexual dysfunction was resolved.  However, after the insomnia started, I could not deal with the 2-3 hours of sleep per night.  It made me irritable, depressed, and cognitively deficient.  So I had to go back on Latuda.  At first, when I restarted Latuda this Spring, I had bad sideeffects (restlessness, nausea) but they resolved (they may also have been due to the higher doses of Ativan I was taking then rather than the Latuda).

I am now waiting to come off of Ativan, and then for sleep to stabilize.  I do not expect sleep to be great as it was before I started the Olanzapine adventures.  But I need it to stabilize before I will try to slowly reduce my dosage of Latuda.  I plan on titrating down as follows: 40mg->30mg->20mg->15mg->10mg->5mg->5mg w/o food to reduce its metabolism->0mg.  I would take 2-3 months between each step, or however long it took for sleep to stabilize.  I am also wary of titrating down while teaching (as opposed to during breaks).  Potentially I may not be able to come off the Latuda (in 2016, it was significantly sedating but now, while taking it, I have insomnia that I believe is largely an after-effect of Olanzapine discontinuation).  

 

In late July, my disability period ends and I have to return to work.  This will be stressful, although, I am doing my best to prepare for teaching this fall.  The pending divorce is also stressful, and I feel a great loss because my son had brought so much joy into my life.  My parents and sister are supportive, but they are on the West Coast and I live on the East Coast. I am lucky in many ways, including in that my sister is a doctor and we have become increasingly close through this difficult experience.

 

I spend a lot of time reading psychiatric studies and ruminating on the future.  That is how I came across ****** Framer's article, "What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications".  Although I had come across your website before, ultimately, it was this article that led me to express my gratitude for your work and reach out to see if you may help.

 

I am currently on Latuda 40mg and Ativan 0.5mg, with expectations that the Ativan will soon be discontinued.

 

[Altostrata]

Welcome, John. Thanks for your kind words.

 

It does sound like you are a person whose sleep is a foundation for emotional and mental stability. This is not a psychiatric disorder, it means you need to maintain a sleep regimen.

 

On 6/2/2021 at 10:18 AM, JohnBanes said:

I have gone up to Latuda 40mg and the insomnia is slowly resolving, again, with support from nightly Ativan at decreasing doses to increase sleep.  

 

You are taking Ativan at decreasing doses? Please explain how you have been taking it, with dosages during this last round of Latuda reinstatement. When did you start Ativan (and Latuda) this time around? Please clarify this in your signature.

 

If you have been decreasing Ativan and your sleep is still improving, that is a good sign you can go off Ativan. But if you are physiologically dependent on it, too-fast reduction might cause the insomnia again.

 

FYI, here are Tips for tapering off lurasidone (Latuda) 

 

[JohnBanes]

Thank you @altostrata for the welcoming words.  I hope the Latuda can be tapered, although it may take a long time.  Currently, I am working on my sleep.  I am also trying to prepare to teach in the fall, when I have a particularly heavy load.  And, although it rends my heart to separate from my son, I am preparing to move closer to my place of work and further from him and his mother.  His mother has been using my diagnosis (as well as my admittedly bizarre but harmless past behavior) to control my interactions with him.  And in the context of a divorce, her control (and my lack of power) have been deeply hurtful and demeaning.  Divorce is hurtful enough with all of its meaning of rejection, but being divorced due to illness (especially mental illness) is a particularly impactful form of rejection.  I have shame and guilt for getting delusional and then becoming crippled by meds, but the divorce intensely magnifies these feelings and leads to self-isolation. 

 

I have updated my signature.  For what it's worth, I have tapered Ativan successfully before when cross-titrating over the course of three months from Olanzapine to Latuda.  At that point, I was switching anti-psychotics with the now dashed expectation that it would be easy to come off Latuda as I had done it easily in 2016 (and because the Olanzapine was causing severe metabolic side-effects among other side-effects).  I am glad to be on Latuda rather than Olanzapine because of the reduced side-effect profile, but the deep disregulation of sleep that is left over from Olanzapine withdrawal as well as Latuda's side-effects are challenging.  Again, I hope to find my way back to the life I had before the delusions and the pharmacology.      

[badmeditator]

Hi John,

 

Thanks for posting about the struggle.  I took 40 mg of Lurasidone for 6 years.  Everyone is different and maybe since you have not taken it as long the taper will go easier for you, which I sincerely hope.  I am sending you good thoughts.

 

I was not successful the first time I tried to taper.  I went from 40 mg to 30 mg over the course of 6-8 weeks, on the advice of my psychiatrist.  That was just terrible advice.

 

My current attempt has been much slower and it's still very hard.  18 months may be realistic to go from 40 mg to zero, and I'm not even confident it will be that soon in my case.

 

I am not in any doubt that rapid withdrawal from lurasidone caused injury to me - be kind to yourself and go very slowly.  Slow is fast - I lost many months when I reinstated the original dose and it really shook me up.

 

Latuda pills crush very easily with a mortar and pestle.  You can transfer the powder to a digital scale with an artists's paintbrush.  I'd try to stick to the 10% method described on this forum.  I'm following Mark Horowitz's hyperbolic curve but the two methods are very similar in the end.

 

[JohnBanes]

Thank you BadMeditator for the encouraging words.  I am sorry to hear of the difficult experience you had cutting from 40 to 30, and I hope your slow taper goes smoothly.  I will keep the forum updated as I taper, but currently, I am still reducing my sedative and waiting for my sleep to stabilize.  I may be at Latuda 40 for a while.  

 

From your signature, it looks like you were on Risperidone for a while before transitioning to Latuda.  I'd be curious to hear more about your journey, why you switched to Latuda, and why you ultimately chose to come off it.

[badmeditator]

The switch from risperidone to lurasidone was not my idea. My psychiatrist told me one day that lurisidone has fewer metabolic effects (weight gain, lipid issues, blood sugar issues).  He moved me over to 20 mg of lurasidone overnight.  I think I had risperidone withdrawal issues because I doubled the initial dose of lurasidone to 40 mg on my own.

 

I became aware of the 2011 MRI study that showed what psychiatrists euphemistically call "possible adverse brain structural changes."  The drug companies must have had a bad week because i'm pretty sure that really means "antipsychotic drugs seem to cause brain damage."  Fortunately they have tons of money and they just invented a story that it's the illness that causes the brain damage, and followed up with a PR campaign.

 

Last year CAMH in Toronto published a study that pretty clearly shows it's the antipsychotic drugs causing the brain damage, not the illness.  The longer you take AP medication, the more brain damage you get.

 

https://www.camh.ca/en/camh-news-and-stories/anti-psychotic-medication-linked-to-potentially-adverse-changes-in-brain-structure

 

So I'm not taking it anymore, only question is how long it's going to take for me to get off it.

 

 

[JohnBanes]

I agree.  The pharmaceutical industry is amazing when it comes to selling an image of the drugs as effective and side-effect free.  I hope your Latuda taper goes well.

 

I am now free of the sedatives, and my sleep is adjusting. I can sleep 5-7 hours a night, albeit, sadly with about three interim awakenings.  Provided my sleep stabilizes, I may try to join you on a Latuda taper...

[NNhope]

Thanks for stopping by my thread.

 It's good that you were able to get off olanzapine. Hopefully you settle soon and are able to taper off latuda.

 

 

 

[NNhope]

@badmeditator that is scary about the brain damage. Now more then ever, I can't wait to start tapering and get off the AP.

Someday I wonder if is it better to just CT and suffer for a while. 

[Shep]

On 6/29/2021 at 4:41 PM, JohnBanes said:

I am now free of the sedatives, and my sleep is adjusting. I can sleep 5-7 hours a night, albeit, sadly with about three interim awakenings.  Provided my sleep stabilizes, I may try to join you on a Latuda taper...

 

John, I'm just stopping by your thread to thank you for all of the wise advice you're giving to other folks on the forum. 

 

I'm concerned about your taper and just wanted to post some information and ask a few questions to see if there's a way to make your own journey more comfortable. 

 

On 6/2/2021 at 1:18 PM, JohnBanes said:

I am now waiting to come off of Ativan, and then for sleep to stabilize.  I do not expect sleep to be great as it was before I started the Olanzapine adventures.  But I need it to stabilize before I will try to slowly reduce my dosage of Latuda.  I plan on titrating down as follows: 40mg->30mg->20mg->15mg->10mg->5mg->5mg w/o food to reduce its metabolism->0mg.  I would take 2-3 months between each step, or however long it took for sleep to stabilize.  I am also wary of titrating down while teaching (as opposed to during breaks).  Potentially I may not be able to come off the Latuda (in 2016, it was significantly sedating but now, while taking it, I have insomnia that I believe is largely an after-effect of Olanzapine discontinuation).  

 

How are you doing with your symptoms after coming off Ativan? Is poor sleep your only symptom? 

 

What date did you stop the Ativan and at what dose? Please let us know the details of this. Depending on the date you stopped and the severity of your symptoms, you may benefit from a small reinstatement. Benzo reinstatements are best done within a month of coming off, so you may be within a safe reinstatement window. 

 

I'm glad to read you're not in a hurry to rush into the Latuda taper. The fact that you came off Ativan so quickly, in addition to the "Olanzapine adventures", as you call it, are likely what are causing the sleeping problems. We recommend tapering no faster than 10% a month off the previous month's dose. Please see:

 

Why taper by 10% of my dosage?

 

This thread may be helpful for getting a bit more sleep: 

 

Tips to help sleep: so many of us have that awful withdrawal insomnia

 

Please post the taper rate of your Ativan reductions and the date of when you stopped. Also, please let us know what dose you stopped. The goal will be to get as functional as you can before you resume your teaching responsibilities, which is no small feat, especially in today's pandemic world. 

[JohnBanes]

I recognize that for some people, Ativan withdrawal is rough.  Fortunately, I am not in that camp.  But unfortunately, I am in the small fraction of people that has a rough time coming off Olanzapine.  I had insomnia each time I tried to reduce my Olanzapine dosage, until I finally cross-titrated to Latuda with the support of a psychiatrist in December 2020 (he did not support coming off antipsychotics completely, but he did support reducing the adverse side effects from Olanzapine through switching to a new med).  Ativan is what I used to help me sleep while cross-tapering.  At the end of using the Ativan during the cross-taper, I had some headaches.  I did not use the 10% method, instead going down from 2mg->1.5mg->1.0mg->0.5mg->0.25mg every couple of weeks.  But again, the Ativan taper seems to have worked fine and I attribute the trouble sleeping to the Olanzapine withdrawal.  

 

There was a second time I went on Ativan, which was after I tried to take myself off of Latuda.  I tapered off Latuda too quickly, going from 40mg->30mg->20mg->0mg in about three weeks.  My already wobbly sleep became wobblier, and then after about three weeks of 0 Latuda, I got terrible insomnia where I could only sleep 2-3 hours a night.  After a week of this, I talked with my psychiatrist about what was going on, and reinstated Latuda.  The reinstatement was rough, and it took about two months to regain the wobbly sleep I had before coming off Latuda.  During the reinstatement, I used Ativan roughly at the same dosages (and following the same titration schedule) as the first time.  However, the steps down did not come with new side-effects and I didn't even have rebound insomnia the first few nights after dropping a dose.  To answer your question, I stopped Ativan completely about two weeks ago -- but I am not planning on reinstating because, again, I attribute the insomnia to long term Olanzapine withdrawal.

 

I think withdrawal symptoms are highly individual specific.  I understand that the majority of folks don't have severe problems coming off psychiatric meds, which is where psychiatrists get their faulty notion that these meds are safe and don't require more reflection before initiating.  But a fraction of people develop problems, whether it is sever side-effects while on them, severe withdrawal effects when stopping them, etc.  And it is incredibly frustrating that the psychiatric profession does not recognize these unfortunate cases and give forewarning.  I guess things are somewhat getting better.  Dependency on Ativan and other benzos is now well known, and there are rehab clinics making a business out of helping people taper.  And increasingly, the withdrawal effects of antidepressants are being recognized in the literature, including that some folks face long term problems after discontinuing.  With respect to antipsychotics, the situation is worse.  This is partly because for many patients, the guidelines expect indefinite treatment so the possibility of withdrawal does not come up in the course of standard treatment.  There are not many psychiatrists that would willingly help folks with two or more psychotic episodes taper down (if you know of any in the NYC/NJ area, I would love to hear from you).  Most of the cases that psychiatrists see where discontinuation may be in order are where seroquel (usually it is seroquel) is prescribed off-label as a sleep aid, and then the patient wants to discontinue.  That is where psychiatrists encounter the problem of non-psychotic people (a more credible contingent) running into withdrawal problems, even at a low dosage of anti-psychotics.  I am waiting for the day that these experiences, or perhaps even the broader AP community's experience, is systematically analyzed so that the profession acknowledges the challenges some patients face when trying to withdraw.

[Gridley]

3 hours ago, JohnBanes said:

I understand that the majority of folks don't have severe problems coming off psychiatric meds, which is where psychiatrists get their faulty notion that these meds are safe and don't require more reflection before initiating.  But a fraction of people develop problems, whether it is sever side-effects while on them, severe withdrawal effects when stopping them, etc. 

 

Thank you for your posts.  I think they are helpful to many here on the site.

 

There's no way to tell exactly how many people have problems with withdrawal, especially since so many psychiatrists misdiagnose withdrawal as "return of the underlying condition" and thus begins or continues the drug merry-go-round.  The percentage I have found most convincing is that about half of the people who try to discontinue psychiatric drugs suffer WD and half of those suffer severe WD.  This is only a percentage of the people who have tried to stop.  How many have never tried or never learned that withdrawal syndrome was even a possibility?  

 

https://www.sciencedirect.com/science/article/pii/S0306460318308347?via%3Dihub

[JohnBanes]

I like that article, thank you for sharing.  At some point, I will post a list of other articles on withdrawal that I found over the course of my internet wanderings.  The one that got me to open a thread and start writing is the one attached, from one of the venerable moderators.

 

I am sadly all too familiar with the drug merry-go-round you mention.  It is ridiculous that I've had new symptoms following drug discontinuation ascribed to a new (not even the old) disease, twice now.  One time it was insomnia leading to a bipolar diagnosis.  I stopped taking lithium eventually (it was interfering with my thyroid); fortunately I haven't (ever) had a manic or hypomanic episode.  Yet my psychiatrist doesn't acknowledge this as evidence of the potential for misdiagnosis.  The second time it was insomnia leading to a depression diagnosis, which I am still noodling on as I am not convinced that my trouble sleeping is due to depression.  Psychiatrists are too eager to pathologize and treat, and all too reluctant to admit the uncertainty and risks around the treatments.

 

When dealing with antipsychotic withdrawal, the saddest part is that withdrawal can cause a surge in associations and other mental activities that lead to psychosis (e.g., delusions).  No one warned me, and although I was relatively healthy--only experiencing paranoia--when I went ahead and withdrew on my own, I had a real delusional break.  That cemented the diagnosis, and has led to a lifetime of suffering on many dimensions.  My family does not believe me and is very concerned about me stopping meds.  I don't know how many countless others went through something similar, where they had mild mental (as opposed to brain) problems, were given an antipsychotic, withdrew because of the side-effects and without knowing about the discontinuation effects, and then had a significant psychotic episode confirming the original pessimistic diagnosis.  And of course there is the fear that I am being optimistic and am really sick in much the way the psychiatrist says I am

What I Have Learnt from Helping Thousands of People Taper Off Antidepressants and Other Psychotropic Medications.pdf

[Shep]

17 hours ago, JohnBanes said:

I recognize that for some people, Ativan withdrawal is rough.  Fortunately, I am not in that camp. 

 

This is great, John. Now that you're off this drug, you may want to avoid all benzos in the future. This is due to the potential of kindling your nervous system. Kindling is a neurological condition in which repeated withdrawals cause worsening symptoms. Some people are fine going on and stopping a benzo one time, but the next time they start and stop, the withdrawal symptoms are worse. We see this a lot on the benzo withdrawal forums. This is one reason people's experiences vary so much on benzos. 

 

10 hours ago, JohnBanes said:

And of course there is the fear that I am being optimistic and am really sick in much the way the psychiatrist says I am

 

Have you come across Robert Whitaker's writings? That may help ease your mind that you are not "sick in much the way the psychiatrist says I am" type of thinking.

 

He wrote the book Anatomy of an Epidemic, which comes highly recommended. Here's the book trailer:

 

Robert Whitaker, author Anatomy of an Epidemic video (11.5 minutes)

 

[JohnBanes]

Could a moderator please add tags to this thread showing it relates to Latuda/Lurasidone and Olanzapine/Zyprexa?

[JohnBanes]

Thank you!  I much appreciate the tags!