Jellyfish: hallucinations after quitting antipsychotic

[Jellyfish]

Does this happen/is it possible?

I was first put on antipsychotics for banal reasons (walking on wrong side of the road, etc.). Ever since first giving up antipsychotics, I had terrible side effects which amounted to psychosis with hallucinations, when I never had hallucinations or anything similar before taking an antipsychotic. This started in 2016, since then I kept relapsing and being taken to hospital.

I would like to know why this happens? And what is the best way of getting off? I once tried tapering them over 6 months, but again hallucinations returned and then I am in no state to function normally.

Edited December 25, 2020 by manymoretodays

[Altostrata]

Welcome, Jellyfish.

 

Other than the hallucinations, do you have other symptoms after going off your drugs? What are the hallucinations like?

 

Yes, people can have symptoms that might be interpreted as psychotic from going off any type of psychiatric drug, no prior psychosis necessary.

 

What drugs were you taking? How did you go off?  How long have you been off the drugs?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[Jellyfish]

Titled:  Antipsychotics and sugar

 

Hello. I was wondering if you can eat sugar while tapering off antipsychotics, and after tapering off. I normally have one day a week when I can eat as much chocolate and similar as I like, but I try not to go overboard. I still eat a lot though. I am wondering if sugar with antipsychotics is a no-no, must you abstain completely? Any known effects when you mix the two? (Is it proven, or just what you suspect?) Does it mean that your quitting antipsychotics will be unsuccessful and the hallucinations (my withdrawal effects) will come back? It is extremely hard for me to go without sugar.

Thank you.

Edited January 10, 2021 by manymoretodays
added title, merged with main Introduction

[manymoretodays]

Hi Jellyfish, and welcome aboard, @Jellyfish

 

I just moved your most recent post, here, to your Introduction.  Just one Introduction per member.

And you've just arrived too, so this is a very good spot for you to post questions, and updates, concerning your case.  Can you bookmark it?

 

As far as your recent question:

I wonder if your medication could be influencing your sugar cravings?  I know with me, when I was on some of my medications.......I just began to mindlessly eat sometimes, and had all kinds of cravings.  And then many of the AP's(antipsychotics) can lead to the development of a metabolic syndrome too, which I'd guess is related to sugar cravings too.

 

On 12/25/2020 at 1:28 PM, Altostrata said:

Welcome, Jellyfish.

 

Other than the hallucinations, do you have other symptoms after going off your drugs? What are the hallucinations like?

 

Yes, people can have symptoms that might be interpreted as psychotic from going off any type of psychiatric drug, no prior psychosis necessary.

 

What drugs were you taking? How did you go off?  How long have you been off the drugs?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

And then, if you would attend to the above, that would help us out.  Thank you.

 

Welcome again.

L, P, H, and G,

mmt

Edited January 10, 2021 by manymoretodays

[Altostrata]

Hello, Jellyfish. Generally, it's not a good idea to overdo sugar at all.

 

manymoretodays brings up a good question, was this an effect of the drugs?

[Jellyfish]

On 12/25/2020 at 9:28 PM, Altostrata said:

Welcome, Jellyfish.

 

Other than the hallucinations, do you have other symptoms after going off your drugs? What are the hallucinations like?

 

Yes, people can have symptoms that might be interpreted as psychotic from going off any type of psychiatric drug, no prior psychosis necessary.

 

What drugs were you taking? How did you go off?  How long have you been off the drugs?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

Other withdrawal effects are extreme tiredness and hallucinations, which is quite enough. Hallucinations for me are like vivid dreams during day. For me it was as if I was in a reality show with the panel judging me. I saw famous faces from real reality shows, so it wasn't made up in that respect. Once this lasted for more than a year, as during this time I didn't start taking medicine again. It was very exhausting but I remember the majority of it, which isn't the case during normal psychosis.

I was taking olanzapine and fluphenazine dichloride (older drug) mostly, a few times I was put on risperidone. Every time I either quit cold turkey or, as pertains to the last couple of times, I slowly diminished the drugs, this took 6 months at most though. I am still taking olanzapine and fluphenazine dichloride.

[Jellyfish]

On 1/11/2021 at 2:35 AM, Altostrata said:

Hello, Jellyfish. Generally, it's not a good idea to overdo sugar at all.

 

manymoretodays brings up a good question, was this an effect of the drugs?

 I usually don't have sugar cravings as strong as when I take medicine. When I do, it is very hard to resist. That is why I am asking, how bad is it to have a day a week when you can eat sugar and abstain the rest of the time? What are the negative effects of this combination (APs and sugar)? Do you think it can make tapering off less, or unsuccessful?

[Jellyfish]

I also came across "reinstatement" on this forum. Can I reinstate the minimal dose of APs after being medicine-free for a little over a month, if tapering off was unsuccessful? Or do I have to go back to the original dose? (That's usually how long it takes for me to get hallucinations after quitting medicine, so I would have to wait that long to see if I am ok.)

And after that, do you suggest just tapering off (the minimal dose or otherwise) more slowly?

[Altostrata]

Jellyfish, we need to know what you're taking, when you started, what dosage, etc.

 

If you're still taking an antipsychotic, the effect of the drug may be making you crave sugar. About overdoing sugar, the answer is the less you eat, the better. Sugar is not good for you, even binged only once a week. If you have further questions about this, I suggest you join a forum for pre-diabetes, diabetes, or weight gain from antipsychotics, they'll have more detailed information for you.

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[Jellyfish]

17 hours ago, Altostrata said:

Jellyfish, we need to know what you're taking, when you started, what dosage, etc.

 

If you're still taking an antipsychotic, the effect of the drug may be making you crave sugar. About overdoing sugar, the answer is the less you eat, the better. Sugar is not good for you, even binged only once a week. If you have further questions about this, I suggest you join a forum for pre-diabetes, diabetes, or weight gain from antipsychotics, they'll have more detailed information for you.

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

Hello. Could you now answer the questions about reinstatement? (I hope the sig. is ok.)

Thank you for letting me know about sugar.

[Altostrata]

How are you tapering the 2 drugs? How much are your taking of each now?

 

Are you getting withdrawal symptoms? If so, I would stop tapering for now. We prefer people taper only one drug at a time, so they know where any withdrawal symptoms are coming from.

 

As you're in the middle of tapering, we can't really discuss reinstatement. The idea is to taper gradually enough that you don't need to rescue yourself with reinstatement. If you've thinking of simply quitting in the middle of your taper, that isn't a good idea. Even reinstatement might not reverse withdrawal from 2 drugs.

[Guest]

My hallucinations during withdrawal have sent me over the edge and made me become one who “catastrophizes” all the time. I actually saw the word first being used by altostrata on this site and its most definitely a word i use now cause it perfectly describes me....but its really the hallucinations ive had for years after coming off zoloft that has caused me to always think every symptom or experience i have is the end of life itself, akathisia on top of perceptual issues can fool one into thinking that. For a while i thought my acne was also demonic possession at night time basically thrashing at me, ive woken up before with cuts all over my legs, still have never been able to explain it, but my catastrophizing self assumes its supernatural. In fact i see my entire withdrawal now from a very spiritual standpoint. I no longer drive currently cause the hallucinations got worse during driving

[Jellyfish]

On 1/15/2021 at 6:29 AM, Altostrata said:

How are you tapering the 2 drugs? How much are your taking of each now?

 

Are you getting withdrawal symptoms? If so, I would stop tapering for now. We prefer people taper only one drug at a time, so they know where any withdrawal symptoms are coming from.

 

As you're in the middle of tapering, we can't really discuss reinstatement. The idea is to taper gradually enough that you don't need to rescue yourself with reinstatement. If you've thinking of simply quitting in the middle of your taper, that isn't a good idea. Even reinstatement might not reverse withdrawal from 2 drugs.

 

I am tapering by 10 percent or 5 percent of the original dose every two weeks for each medicine. This is quick by your standards, but I am currently doing The Road Back programme and this is recommended in the book. I want to give this programme a go. Later, I may taper more slowly. I am also stopping to hold some doses longer (2 or 1 month), just in case.

I am currently taking 7.5 mg of olanzapine and 3.75 mg of fluphenazine.

Altostrata, do you think just tapering slowly enough is enough to offset something like a supersensitivity psychosis (psychosis you get as a withdrawal symptom when you never had psychosis before)? It just seems, from experience, that is like spitting in the sea (just not enough to make any real difference). I have a feeling that if you have these symptoms, just tapering slowly enough is not enough to offset hallucinations, which you get because there is no longer any of the medicine in your system and your brain just does not seem to adapt. And at some point, you will always come to the point of taking 0 medicine. Have you ever considered this?

And by the way, have you come across someone before who struggled with this (hallucinations after you stop taking medicine while never having them before)?

[Altostrata]

We urge people to taper more slowly so they do not develop withdrawal symptoms. Supersensitivity psychosis is caused by upregulation of dopamine receptors. Theoretically, slower tapering will allow the receptors to more gradually normalize during the taper, avoiding severe supersensitivity psychosis symptoms.

 

Running this site would be a lot easier if we could only point people to The Road Back or similar programs for advice. However, there is a good reason we do not recommend those programs. We do not agree with their regimens or intentions.

 

If you want to follow their advice and buy their supplement programs to supposedly support your taper -- which we explicitly do NOT recommend because we haven't seen them work -- and you get withdrawal symptoms, it seems to me only fair that you should participate in their forums for support rather than ask us to help you out.

 

We can only tell you that your experience demonstrates TRB advice and program is not helping you, and that you need to taper more gradually.

[Jellyfish]

On 2/5/2021 at 10:45 PM, Altostrata said:

We urge people to taper more slowly so they do not develop withdrawal symptoms. Supersensitivity psychosis is caused by upregulation of dopamine receptors. Theoretically, slower tapering will allow the receptors to more gradually normalize during the taper, avoiding severe supersensitivity psychosis symptoms.

 

Running this site would be a lot easier if we could only point people to The Road Back or similar programs for advice. However, there is a good reason we do not recommend those programs. We do not agree with their regimens or intentions.

 

If you want to follow their advice and buy their supplement programs to supposedly support your taper -- which we explicitly do NOT recommend because we haven't seen them work -- and you get withdrawal symptoms, it seems to me only fair that you should participate in their forums for support rather than ask us to help you out.

 

We can only tell you that your experience demonstrates TRB advice and program is not helping you, and that you need to taper more gradually.

Altostrata, I understand and I will not write about that here.

I tried to write down the taper by 10 percent of previous dose that you recommend, but in the case of one of my medicines, that would add to up to more than six years. Is a taper that slow feasible? Should you really go that slow to avoid withdrawal symptoms like I have when tapering APs, or can you speed up a bit? Actually, a taper how slow would you recommend for APs?

[Jellyfish]

On 2/4/2021 at 3:39 PM, Ryguy said:

My hallucinations during withdrawal have sent me over the edge and made me become one who “catastrophizes” all the time. I actually saw the word first being used by altostrata on this site and its most definitely a word i use now cause it perfectly describes me....but its really the hallucinations ive had for years after coming off zoloft that has caused me to always think every symptom or experience i have is the end of life itself, akathisia on top of perceptual issues can fool one into thinking that. For a while i thought my acne was also demonic possession at night time basically thrashing at me, ive woken up before with cuts all over my legs, still have never been able to explain it, but my catastrophizing self assumes its supernatural. In fact i see my entire withdrawal now from a very spiritual standpoint. I no longer drive currently cause the hallucinations got worse during driving

Thanks for sharing your experience, Ryguy. I hope this month has gone well for you.

[ChessieCat]

I think it is better to go a slow as you need to go so as to get off with a little discomfort as possible.  To do this you need to listen to your body and symptoms.  And it is better go slow enough so that you do not bring on withdrawal symptoms instead of trying to recover once you experience worse withdrawal symptoms.  Some SA members have tried to go too fast and it has ended up taking longer than if they had just gone at a nice slow rate.  And some have ended up on an additional drug which then needs to be tapered.  Some have never returned to their previous WDnormal.

 

I've recently posted my musings about how to finish my taper.  I suggest you read my posts and the responses I received.  It might help you to be more understanding and accepting of the slow process of getting off.  I do not like that it is going to take me so long (being annoyed or angry about it is not going to change the fact, but only cause frustration) but I would rather continue carefully and being able to live my life as normally as possible than to risk things going bad.

 

This is the first post:

 

chessiecat-so-im-not-the-only-one-pristiq-desvenlafaxine

 

[Altostrata]

As Chessie suggested, it takes as long as it takes. You'll want to taper the most troublesome drug first. The good news is you'll probably feel progressively better as the dosage gets lower. Going off may take a long time but you may see encouraging signs as you go.

[hayduke]

Hi Jellyfish,

 

Best to really minimise sugar, and probably fatty foods too.  My weight gain on olanzapine has been measured in 10s of kg.  I always try to walk for 30-45 mins every day or ride a push bike, swim etc to keep everything moving.  Lately I've been able to start doing more brisk cardio again and am finding dieting more practical.  I have done a few fasts along the way and I think these are the only reason I did not develop full blown diabetes from the side effects of this compound.  You might find getting blood tests now and again will give useful insights.

 

Unfortunately I feel that ChessieCat is right - tapering takes as long as it takes.  You could sprain your ankle badly and say "well, I think this should be healed in 3 hours, why wouldn't it", but your body will let you know when it's ready, and no good comes of trying to walk on it because you think it _should_ be ready earlier, or someone in a uniform told you they think it takes 3 hours.  (And they don't have to walk on it, you do 🙂 )

 

You can have a look at the graph in my signature below if you want.  Some people say I have patience with getting off it, but really I'm not hanging out any longer on any particular dosage than I feel I need to.  Again ChessieCat makes a great point - you want to be able to function ok and enjoy the good things in your life along the way.  You learn to surf the edge of that vs tolerating the withdrawal side effects.  It's demanding enough that way anyway - if I went any faster my life would be in much worse shape, and where's the sense in that.

 

Learning how to safely and healthily channel consequent anger has been a good thing for me to focus on, too. 

 

Cheers,

Hayduke

[Jellyfish]

13 hours ago, Altostrata said:

As Chessie suggested, it takes as long as it takes. You'll want to taper the most troublesome drug first. The good news is you'll probably feel progressively better as the dosage gets lower. Going off may take a long time but you may see encouraging signs as you go.

Thank you. What happens if I spend those six years or more tapering off, and the result is I still get hallucinations as a result of going off? What will that say about me, that I cannot go off them, that I am an impossible case? I just feel this is likely because I have tapered off relatively slowly before but the result was the same.

In that case, what would you next recommend?

And can I ask you, what do you think about withdrawal clinics, like ATMC? (https://www.alternativetomeds.com/)

Do you think they do a better job than you can do yourself, and that they have something in their approach that prevents withdrawal?

[Jellyfish]

Thank you ChessieCat and Hayduke for sharing your advice, too. Hayduke, you are very patient.

[Altostrata]

Jellyfish, we advise very gradual tapering so you can stop if you feel symptoms such as hallucinations returning. You may wish to remain on a minimal dose of whatever drug seems to control these symptoms, if you do not feel you can manage them without drugs. 

 

It is possible, for example, that you might decide to stay on 1.78mg olanzapine. Minimizing the dosage will minimize risk of long-term adverse effects.

 

2 hours ago, Jellyfish said:

And can I ask you, what do you think about withdrawal clinics, like ATMC? (https://www.alternativetomeds.com/)

 

 

We do not recommend Alternative to Meds. It is an ordinary detox facility. They do not have any magical solutions.

 

[hayduke]

7 hours ago, Jellyfish said:

Hayduke, you are very patient.

 

The process definitely teaches you patience. 

 

But how about framing it this way.  You're standing atop a mountain pass, in just your clothes.  There is a sheer drop of many thousands of feet to the valley where dinner is waiting, and a meandering path that will take you all day to walk down.  I don't see choosing the path over the sheer drop as patience, if you consider what sort of shape you'd be in after the 'short cut' eh

 

Or yet another way - do you not think I would be tapering faster if it was effectively possible?

 

:-)

[Jellyfish]

On 2/24/2021 at 10:07 PM, Altostrata said:

Jellyfish, we advise very gradual tapering so you can stop if you feel symptoms such as hallucinations returning. You may wish to remain on a minimal dose of whatever drug seems to control these symptoms, if you do not feel you can manage them without drugs. 

 

It is possible, for example, that you might decide to stay on 1.78mg olanzapine. Minimizing the dosage will minimize risk of long-term adverse effects.

 

 

We do not recommend Alternative to Meds. It is an ordinary detox facility. They do not have any magical solutions.

 

 

Sorry if it seems like I am repeating myself, but what do you think about this Belgrade hospital? It is closest to me so I could actually go there and try to get off the drugs. There is no option for "antipsychotic detox" if you look, but they said on the phone that they could get me off APs, too. http://heroindetoxeurope.com/

I imagine they must have all the machinery and tools for that and it must be worth trying?

 

About ATMC, how come you don't recommend it, I saw online somewhere their rate of success in detox from APs was 80 or even more percent. That seems like a lot and worth trying?

[Jellyfish]

On 2/25/2021 at 2:57 AM, hayduke said:

 

The process definitely teaches you patience. 

 

But how about framing it this way.  You're standing atop a mountain pass, in just your clothes.  There is a sheer drop of many thousands of feet to the valley where dinner is waiting, and a meandering path that will take you all day to walk down.  I don't see choosing the path over the sheer drop as patience, if you consider what sort of shape you'd be in after the 'short cut' eh

 

Or yet another way - do you not think I would be tapering faster if it was effectively possible?

 

🙂

You're still very patient and congratulations for that, when you do not even know if it will all work out in the end. I.e. if there really is dinner waiting for you.

[hayduke]

2 hours ago, Jellyfish said:

You're still very patient and congratulations for that, when you do not even know if it will all work out in the end. I.e. if there really is dinner waiting for you.

 

Thanks.  If you get put on these drugs to sedate you after messy unresolved issues and stuff starts coming up (which may sometimes be perceived as 'psychosis'), it stands to reason that since the drug doesn't (and can't) resolve them for you, that they will be unmasked again as the drug reductions diminish its effects.

 

In my case that's meant a lot of therapy, identifying and working on processing the traumas, and that's hard work too.  But for me it's leading to reintegration, better health, getting rid of a lot of ugly festering baggage, and an understanding of my life's course that just wasn't there before. 

 

Beforehand, and in fact while on the drug but before therapy, I had considerable anxiety and mental 'noise' most of the time.  Since doing therapy they are basically gone.  If I do get anxiety now, which isn't all that often, I'm pretty clear what it's about - I take this to be pretty normal functioning, and a massive improvement.

 

Not wanting to strain the analogy, but maybe you need to pick some ingredients for dinner on the way down the hillside :-)

[Altostrata]

On 3/24/2021 at 12:38 PM, Jellyfish said:

they said on the phone that they could get me off APs, too. http://heroindetoxeurope.com/

I imagine they must have all the machinery and tools for that and it must be worth trying?

 

About ATMC, how come you don't recommend it, I saw online somewhere their rate of success in detox from APs was 80 or even more percent. That seems like a lot and worth trying?

 

The methods applied in detoxing people from addictive drugs such as heroin are not appropriate for psychiatric drug tapering. They do not intend to minimize withdrawal symptoms, only to get you off the drug and into rehab. You have to deal with post-acute withdrawal on your own.

 

ATMC will promise anything to get people to go there and pay for their services. We do not recommend them. If we knew of an ethically run withdrawal facility, we would send everyone there, close up this Web site, and take a vacation.

[goggins]

On 3/25/2021 at 10:07 PM, Altostrata said:

 

The methods applied in detoxing people from addictive drugs such as heroin are not appropriate for psychiatric drug tapering. They do not intend to minimize withdrawal symptoms, only to get you off the drug and into rehab. You have to deal with post-acute withdrawal on your own.

 

ATMC will promise anything to get people to go there and pay for their services. We do not recommend them. If we knew of an ethically run withdrawal facility, we would send everyone there, close up this Web site, and take a vacation.

 

@Altostrata

do you know of any specific negative cases related to ATMC? I'm curious as to why you seem to have such a negative perception to them.

 

ATMC seems to put some emphasis on the fact that there's specific care for SSRIs and Benzos and there's text and video testimonials on their website.

 

I called them and they said it costs 65k USD for a 60 day treatment, with optional upgrades and some insurance support. Regardless of their quality and ethics, unfortunately that's still outside of my realm of possibility. I don't reside in the US (no insurance) and I don't have that kind of money lying around.

 

Edit: nevermind, just found this:

 

[Altostrata]

Please read our existing discussions about this facility. If you want to believe their promises, by all means, become a customer.

[Jellyfish]

On 2/5/2021 at 10:45 PM, Altostrata said:

We urge people to taper more slowly so they do not develop withdrawal symptoms. Supersensitivity psychosis is caused by upregulation of dopamine receptors. Theoretically, slower tapering will allow the receptors to more gradually normalize during the taper, avoiding severe supersensitivity psychosis symptoms.

 

Running this site would be a lot easier if we could only point people to The Road Back or similar programs for advice. However, there is a good reason we do not recommend those programs. We do not agree with their regimens or intentions.

 

If you want to follow their advice and buy their supplement programs to supposedly support your taper -- which we explicitly do NOT recommend because we haven't seen them work -- and you get withdrawal symptoms, it seems to me only fair that you should participate in their forums for support rather than ask us to help you out.

 

We can only tell you that your experience demonstrates TRB advice and program is not helping you, and that you need to taper more gradually.

 

Hi again Altostrata.

I was just wondering, do you have any news regarding what MIGHT be effective in helping taper off? Any other programs, approaches or treatment facilities?

I ask because I tried to taper off and well, psychosis repeated itself. However with TRB supplements it was much milder and liveable ... still, though, I did abnormal things and rituals and after half a year they hospitalised me again, so all in all, though I didn't entirely complete the program, I wasn't successful yet. (Need to update my sig.)

[Altostrata]

I am sorry you have had difficulty reducing the dosage of your antipsychotic. We do our best to explain why careful tapering is necessary, especially if you have had prior symptoms that were called psychotic. See

 

 

No, we cannot recommend any programs or treatment facilities for tapering antipsychotics that would be accessible to you. We do not know any shortcuts to going off antipsychotics. If you don't want to taper, we cannot help you.

 

See 

 

[hayduke]

On 3/8/2023 at 1:24 AM, Jellyfish said:

 

Hi again Altostrata.

I was just wondering, do you have any news regarding what MIGHT be effective in helping taper off? Any other programs, approaches or treatment facilities?

I ask because I tried to taper off and well, psychosis repeated itself. However with TRB supplements it was much milder and liveable ... still, though, I did abnormal things and rituals and after half a year they hospitalised me again, so all in all, though I didn't entirely complete the program, I wasn't successful yet. (Need to update my sig.)

Have you tried working with a trauma informed clinical psychologist, perhaps looking to see if EMDR or other methods may help with your anxieties etc?