skeeko: When all else fails, trying skipping doses

[skeeko]

I was first put on meds against my will at age 27. I was kept on 3 meds for 8 months before I was released. I immediately came off all meds cold turkey and I was fine for a few years. Since then, I have mostly been OFF meds, with short periods of time in between when I experienced symptoms (hallucinations, delusions) and was forced to take medication again against my will. That is, until 2017-2018, when I was hospitalized 6 times following a slow taper which took 4 years to complete. The resulting episode was so horrible that I have been carefully taking my meds since that time. I am now in my 50s and am currently on 300mg Trileptal and 20mg Latuda.

 

I have withdrawn from meds numerous times since 1995 on my own. My prior methods have included: cold turkey, compounding pharmacy conversion to liquid suspension, pill cutting, digital scale. My slowest taper (4 years) still resulted in unacceptable symptoms a few months after my taper was complete.

 

My best results in the past were with going cold turkey. My worst results, it's a tie between using a liquid suspension created in a compounding pharmacy and doing a slow taper which involved crushing.

 

I no longer have a digital jeweler's scale.

 

I have pancreatic cystic fibrosis and a few other medical issues which affect my digestion. I have found that both crushing and converting to liquid both seem to have the same results as going cold turkey. It feels as if I have taken NO medication at all, even when I have only dropped 1 mg.

 

I have asked a few pharmacists about this and they have said that my body does not assimilate medications normally and that they have no recommendations for me except to stay on my meds. However, my current regimen has me so sedated and fatigued that there are many days where I am struggling with sleep paralysis and am asleep for 22-23 hours/day.

 

Recently I spoke with a new pharmacist who suggested skipping doses because that would keep the pills in intact form and would still, over time, decrease the dose.

 

I have seen a few posts on this site by people who do NOT recommend skipping doses. I understand this is because it jolts your system from 100% of the dose down to 0% in a day's time, then back to 100%. I know it is not a great idea but the pill I am trying to decrease (Latuda, 20mg) is so small that decreasing by 10% would require crushing, which does not work for me.

 

Latuda has a half life of 18 hours. It also requires 350 calories of food intake for it to absorb properly, so not taking it with food alters the effectiveness of the dose.

 

I have very slowly begun skipping doses. It has taken me 6 months to get down to skipping 2 doses per week (Sundays and Wednesdays).

 

I am checking to see if there is anyone who has had ANY kind of success with skipping doses.

 

I am also checking to see if there is anyone else here who has had a very difficult time with liquid dose and/or crushing.

 

I had a very difficult time with getting to skipping 2 doses (insomnia, dementia-like thinking). But I am hoping to some day move up to skipping 3 doses. Any experience -- good or bad -- would be most appreciated before I make that jump.

 

Thank you to everyone who contributes to keeping these resources and community alive and going.

 

 

[Altostrata]

Welcome, @skeeko

 

1 hour ago, skeeko said:

Recently I spoke with a new pharmacist who suggested skipping doses because that would keep the pills in intact form and would still, over time, decrease the dose.

 

Yes, many clueless authorities advise skipping doses to taper off psychiatric drugs. We do NOT advise skipping doses, especially if you have a history of having had withdrawal syndrome several times.

 

See NEVER SKIP DOSES TO TAPER 

 

You have a long history of failed taper methods. This indicates you are trying yet another tapering method that will fail:

1 hour ago, skeeko said:

I had a very difficult time with getting to skipping 2 doses (insomnia, dementia-like thinking). But I am hoping to some day move up to skipping 3 doses. Any experience -- good or bad -- would be most appreciated before I make that jump.

 

You can only have a MORE DIFFICULT time if you skip 3 doses.

 

This is the method we recommend: Why taper by 10% of my dosage?

 

Also see What is withdrawal syndrome? 
 
About reinstating and stabilizing to reduce withdrawal symptoms 
 
The Windows and Waves Pattern of Stabilization

 

We will be unable to support you in your tapering method, as it is a method we have seen generate terrible withdrawal symptoms. Nor do we have any remedy if you develop protracted withdrawal syndrome after going off your drugs by skipping doses.

 

Good luck to you in your experiment. Please let us know if you would like coaching in gradual tapering.

 

 

 

 

[skeeko]

Altostrata, thank you for all the links and for your insights!

Are you aware of anyone else who experiences both liquid conversion and crushed pills (not cut pills, which are still somewhat intact) as being the same as going cold turkey, feels the same as missing a dose, but on a protracted basis? I have been told this is most likely due to my pancreatic cystic fibrosis and is different from most people; that for me the pill needs to be intact all the way to my small intestine in order to be absorbed enough to get to the brain. In liquid and crushed form, it immediately processes as waste. This is also why vitamins are useless for me but their formulation is different enough from meds that they do not get absorbed well at all as supplements or as food; I have to take them as injections. I understand this is possibly outside the scope of what you do but I wanted to check in on the off chance you or someone points me in a direction which I couldn't find on my own.

 

[Altostrata]

Not knowing exactly what your previous methods were, I don't know what went wrong with them. We have hundreds of people here tapering using liquids or weighing tablet fragments. There is a way.

 

However, if you've already got yourself into a state of withdrawal, you need to even out your dose so you're taking the same amount every day and stabilize before tapering further.

 

6 minutes ago, skeeko said:

The last pharmacist I spoke with said this is most likely due to my pancreatic cystic fibrosis and that the pill needs to be intact all the way to my small intestine in order to be absorbed enough to get to the brain.

 

It is possible your bad pancreas is involved, but "the pill needs to be intact all the way to my small intestine in order to be absorbed enough to get to the brain" doesn't make any sense. The film coating on a Latuda tablet does not have any magical properties. It is dissolved by stomach acid like any other ordinary tablet and the drug passed along the digestive system with food.

 

Sometimes people have trouble converting from solid tablet to liquid or crushed drug. If it's a concern, we have people putting drops of liquid or weighed tablet fragments into empty gelatin capsules to get them safely into the stomach and the rest of the way down.

 

There are some pharmacists who are informed psychopharmacologists, but it does not sound like the ones you talked to were in this class.

[skeeko]

On 9/19/2021 at 7:33 PM, Altostrata said:

Not knowing exactly what your previous methods were, I don't know what went wrong with them.

When I last tried to come off Seroquel (2015-2017), I had a friend who was a nurse with a jeweler’s scale who crushed and measured precisely the amounts for me then mixed with yogurt. Even with a 1% decrease, it felt as if I had no medicine in my system at all (insomnia, hyper uncontrolled pacing and some delusional thinking and behavior). 

Fortunately, I had her support and other friends to check on me. I ultimately had to return to taking the full dose to get any sleep at all.

 

We then went to a compounding pharmacy to have the medicine converted to liquid suspension. It seemed like a type of oil. Same problem. It felt the same as having no med at all.

 

We finally tried pill cutting into quarters. This was not exact but each quarter was approximately 12.5 mg. I titrated each step per month. If I felt wonky in any way, I waited 2 months or 3 months before decreasing further.  50mg > 37.5 > 25 > 12.5.

 

I then did the same process using pill cutting with Trileptal. I was mostly fine during the titration of both, but became delusional four months after the taper was complete.

 

in the meantime, my friend has died and I do not have familiar people around me. No real support. So I have hesitated to do any kind of taper at all. 
 

I am only able to write here right now because I skipped my dose of Latuda two nights ago. I may sound coherent here right now but most days I cannot write a sentence, check my mail, wash dishes, take a shower, nothing. I am asleep day and night. I am not getting enough nutrition or hydration. I cannot think clearly or function at all.

I no longer have the people or the scale to help with calculating and measuring doses. The cost of compounding pharmacy is now way outside my income. Right now, I do not see a way out of this vicious circle.

 

I have trouble now (except when I skip) with reading and writing, but I hope there might be someone here who experienced something similar and found a way. Thank you for reading this far.

 

 

[Altostrata]

What drugs are you taking now, at what dosages and what times o'clock each day?

[skeeko]

Latuda 20mg, (must be taken with 350 calories)

Trileptal 300mg

8pm

[Altostrata]

On 10/22/2021 at 10:54 AM, skeeko said:

We finally tried pill cutting into quarters. This was not exact but each quarter was approximately 12.5 mg. I titrated each step per month. If I felt wonky in any way, I waited 2 months or 3 months before decreasing further.  50mg > 37.5 > 25 > 12.5.

 

I then did the same process using pill cutting with Trileptal. I was mostly fine during the titration of both, but became delusional four months after the taper was complete.

 

This method of tapering Seroquel appears to be too fast for you. Also, you might have stayed at the lowest dose, 12.5mg, for a good long while to make sure symptoms of psychosis didn't come back, before going off completely.

 

It sounds like your drug combination is making you very dopey. Why are you also taking Trileptal?

 

You might consider tapering Trileptal, but at a much lower rate. See  Tips for tapering off Trileptal (oxycarbazepine) A prescription liquid is available for tapering.

 

FYI Tips for tapering off lurasidone (Latuda) 

 

Not sure how we can solve your titration problem for you. You will have to figure out how to measure smaller doses to taper, or find someone else who can help you.

 

 

 

 

[manymoretodays]

Hello skeeko, and welcome aboard......the surviving antidepressants(and other psychoactive drug) ship.

I have managed to get some(it's still a bit sketchy though) keyboard function back on my preferred system for doing posts to members, so here goes.......

And do your best, to answer questions, and or correct anything you don't think I quite understand yet.

 

As you know, I'm mainly inactive right now moderating, on site.  For you, old friend, skeeko, though, I do want to help.

 

I think I understand that your goal may be to taper your medications to a point that, allows for a better quality of life, e.g. less somnolence, improved cognition.  And without getting into any symptoms of delusions or mania.  And you have related to me that you do not think that all your symptoms are drug related or WD(withdrawal) related, or iatrogenic.  That within your family history there are some who had similiar symptoms as yours, without any interference or treatments of the psychoactive drugs.

 

I think it's possible for you to get to a better stability than what you currently experience.  I do.   And applaud you for coming here, and beginning to plan for that.  That is a completely acceptable use of the site.

 

I also understand that you have gotten the approval from your psychiatrist to taper the Latuda, but that they do not want you taper the Trileptal.  And a couple questions for you around that:

 

1. Did you start both Latuda and Trileptal approximately 4 years ago at the same time?  Any idea why both medications were used?

2.  Can you find out why your current psychiatrist is allowing a taper of Latuda, and would not consider a taper of Trileptal?

(inquiring minds want to know, me in particular, as you might want to change tracks completely and taper Trileptal instead of Latuda now....to be determined of course, nothing is set in stone right now)

 

And I do know that, at the present time, your main support is really your present psychiatrist, as well as a social worker.  I am also so sorry, for your loss of a friend that could help you with tapering.  And that you are scared, as well as possibly frustrated, with your present drugged stability, which is very difficult.  Sleeping or somnolent for so many hours.......it just cannot be great at all.  And you are such a wonderful person skeeko........I mean that, you are, as far as compassion, and kindness, and understanding goes.  It's so sad to me that you are not able to share yourself and all your fine qualities more with others, due to being so sedated all the time.  I'll just reiterate here that you are smart and capable too.  I know that.  And I want you to know that too.  Extremely frustrating sometimes to tap into our intelligence when drugged or recovering from some major symptoms.  I know.  I've been there.  Sometimes still.

 

You had mentioned to me, some sleep paralysis as well.  Are you having the sleep paralysis where your mind is wakeful but your body just won't get up and go, or do anything?

 

And I also don't think that you will get where you'd like to be eventually by continuing with your skipping doses plan.  It just isn't safe.  I think that you might very well be confusing your nervous system, especially the receptors and neurotransmitters, affected by Latuda, over and over again, by the flucuating blood levels, and I just don't see that it is the way forward for you or anyone who is trying to reduce a anti-psychotic or any other psychoactive medication.   And then if you just keep skipping doses more frequently, and then finally, just jumping off Latuda completely, at some point.......there is just no telling what the result might be. I know it has given you brief interludes of improved cognition, and possibly less somnolence.......yet, still there has to be a better way for you to get from here to there.  There...... being, less sleepy all the time, and improved cognition, as well as activities......that make life worthwhile. 

 

I wanted to get the article below in your thread too.  Horowitz is suggesting, again, same as we do, the same kind of hyperbolic, not linear tapering, and then with the final dose prior to stopping the drug, being just 1/40 of the starting dose.  Hyperbolic means each dose decrease is based on the previous dose(rather than the starting dose).  And when one gets to the lower dosages, the percentage decrease is often less.  It's based on receptor saturation, and giving time for the neuro -receptors to normalize and re-adapt(after drug changes).  AND, this article is specific to tapering AP's.....
Horowitz, 2021: A Method for Tapering Antipsychotic Treatment that May Minimize the Risk of Relapse

(fixed link to Horowitz article, mmt, 11/3/21)

You'll also see a nice lay out of potential WD symptoms, and what they are related to.  What I also like in the above article, is the really good explanation, with pictures, of what happens, to the receptors, when dosages of several similar antipsychotics(similar to Latuda), are reduced.  I know it's pretty technical/scientific and takes a read through or three or more, to even begin to picture and conceptualize what one's physiology goes through with specifically an AP taper.  So take your time, read and study, at any pace that feels comfortable to you now......  all of the links really, Altostrata has given you some in the above posts, as well.

 

I think I do get completely that under no circumstances do you want to risk returning to any symptoms close to the symptoms you had some 4 years ago.  And will be honored to do anything I can to help you begin a decent taper, when you are ready, and will do my best, even from afar, to help you avoid slipping into mania/delusions, or the more scary symptoms, by just offering guidance on your Latuda taper and of course, I can always ask some of the other staff too, for help to apply some of the AP de-prescribing principles that minds greater than mine ARE working on now.

 

Of course, I do think you need to abandon this skipping doses of Latuda idea, as soon as possible, and especially trying to get up to skipping three doses every week, rather than 2........as it just worries me sick, that it will lead to MORE instability.  In my mind......it's playing with fire skeeko.  Taking more risk than you need to.  If you can get back to daily dosing of Latuda.......I think we could expect blood levels to stabilize within about a week or two.  And then getting you to a point to begin a taper, confidence, equipment, etc......might be a bit longer.  Which you know I'm happy to help with. 

 

And then I am aware that with previous tapers from different medications, you ran into some difficulty when you went to liquid, and/or compounded doses to taper.  It's hard to know if that was due to the liquid absorption or going to a new form of your drug while also dropping a dose.  Never do we recommend making more than one change at a time.

**The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

And we might consider, just using a solid form, either weighed pill fragments, or crushed pills, and then putting your weighed doses into gelatin capsules.  Maybe even starting with a full dose in a gelatin capsule, so we can make sure that it doesn't make you feel like you had not taken any of your drug at all.......before.......even beginning to taper, and to help you gain confidence too.   I can help you, when the time comes.  

 

And so, I just reiterate, or repeat again,  that you can further study your case, and responses given here, at any time, even when signed out........right here on your Introduction page.

This now, try to consider it, as a planning time, not so much an action time, but a planning and learning, and gaining confidence time for you.

 

Please review the links that Altostrata gave you, around NOT skipping doses.  And then these 2 as well:

 Why taper by 10% of my dosage?

 

Also see What is withdrawal syndrome? 

 

Is your only internet access via a phone device?  That would make it more difficult for me to read and absorb.  I often print things out.  So, if only a phone device now, I'd suggest, if at all possible working towards using a library and their computers and maybe even printers if you need to. 

 

Your Introduction page here, can also act as a reference resource too.  You'll have some stuff here you can refer back to, and read or look at, when you are at your best.  If your psychiatrist is interested in helping with a taper at all, and possibly in a new way that they have never been enlightened to, they might be interested too.  I'll let you make that call.  You'd only need to give the title of the article, and author(s), and the full reference information, and I think your psychiatrist could access it too, without necessarily bringing them to your Introduction/reference/communication with others page here.

 

I'm not sure what to make of your DNA test that showed you had some form of pancreatic enzyme defect.  You had related that the doctor said it looked like Cystic Fibrosis....and then elaborated that it could not be that, or you would have died by now.  And then you also related that due to insurance or financial, that you couldn't pursue further testing.  Oh, skeeko......I sure hope that you can qualify for, and get some general body specific, medical care and evaluation sometime soon.  It would certainly be to your benefit.  And I trust you are aware, of the "metabolic syndrome" that can occur with the antipsychotic class of medications.

 

From a lay person's point of view, I'd just like to add that it's the same pancreas function, that you have now, while on 20 mg of Latuda and 300 mg of Trileptal, and shouldn't necessarily be a detriment to beginning a taper.

 

And, I am very proud of you, for seeking out information, even in the midst of an ill advised method of tapering.   🤗💜

 

This is also your main page, to respond to questions, or ask questions regarding you and your taper, as well as to communicate with other members too, which you may want to do one day.....offering mutual support.

 

(((((((skeeko))))))) those are your virtual hugs, skeeko, my friend,

And welcome again.

 

Love, peace, healing, and growth,

manymoretodays (mmt)

 

Edited November 4, 2021 by manymoretodays
fixed my link to Horowitz article