libre: getting off quetiapine

[libre]

Hello everyone,

I was on this forum years ago, but forgot my old usersname so I made a new account. I'm currently trying to get off of Seroquel, 325 mg, which I've been on since 2007 for non-psychotic complaints and quit too fast in 2017, even though leading up to me quitting completely I'd gone through years of very slow and difficult tapering.

Some two months after my last dose in 2017 I got my first psychosis ever, together with other horrible withdrawal-symptoms which lasted for months, until after some 7 / 8 months or so the quetiapine was reinstated. In april 2020 I started tapering down from 550 mg, I am now down to 325 but considering if I need to go up again since I was yesterday hit by a lot of quite disconcerning withdrawal symproms, including psychosis again. (I was able to retain my lucidity throughout it though).

Withdrawal-symptoms I've suffered have been intense memory-problems, so badly that I would after a time-span of 20 seconds not remember what happened 20 seconds before. This is ofcourse completely incapacitating and makes it impossible to function.

Apart from that gastrointestinal symptoms, shocks, ticks and spasms, to such a degree that if I were to have to discontinue way too fast I doubt I'd survive it cause I would not be able to breathe anymore due to the spasms / shocks too.
Confusion, weird physical sensations that I can not name, fogginess, lack of oversight, akathisia, hypersensitive to stress and other stimuli, down, depressed, feelings of terror, visual hallucinations, paranoia, drowsiness, lack of motor-function / control, panick, suicidal thoughts.
I think that covers most of it for now.

I am determined to make it through this somehow, I'm gonna look this terrible beast in the eye and make it an ally, since I believe that anything we resist and condemn only clings to us harder. Thanks to a process of spiritual awakening which started years ago and a lot of work on myself I have access to levels of deep trust and faith, though of course me being only human those are hard to access when in the middle of debilitating and frightening withdrawal-symptoms.

But I do feel that I am blessed with the inner resources I've built up over the years and am determined to make it through somehow.

I am sending so much love and healing-vibes to everyone here on this forum and want to express my gratitude for the existence of this website. Thank you so much AltoStrata and other moderators, this website I am sure is a life-saver for so many people dealing with this incredible hard stuff.

Libre.

[Shep]

Hi, Libre.

 

Welcome back to Surviving Antidepressants. 

 

Here are some links for easy reference, although you may already be familiar with them from your last experience here.

 

Tips for tapering off quetiapine (Seroquel)

 

Why taper by 10% of my dosage?

 

The Windows and Waves Pattern of Stabilization

 

1 hour ago, libre said:

In april 2020 I started tapering down from 550 mg, I am now down to 325 but considering if I need to go up again since I was yesterday hit by a lot of quite disconcerning withdrawal symproms, including psychosis again. (I was able to retain my lucidity throughout it though).

 

Going from 550 mg in April 2020 (18 months ago) to 325 mg is almost a 60% reduction. That would average a little over 3% a month. Where your reductions evenly distributed over the past 18 months? 

 

Have there been any other changes, such as adding in or removing other drugs or supplements? Any increased life stressors? 

 

Are you sleeping? When was your last reduction and at what dose? As you tell us more about your taper (monthly reduction rate and hold times), we'll be able to answer updosing questions. 

 

Please add a signature.  Include drugs, doses, dates, and discontinuations & reinstatements in the last 12-24 months. Also include supplements. This will help us give you the most accurate advice we can. 

• Any drugs and supplements prior to 24 months ago can just be listed with start and stop years. 
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016. 
• Please leave out symptoms and diagnoses. 
• A list is easier to understand than one or multiple paragraphs. 
• This is a direct link to your signature:  Account Settings – Create or Edit a signature.

As you provide more information, we can better guide you in setting up a game plan for your taper. 

[libre]

Hi Shep,

Thank you so much for your answer and elaborate inquiry. My memory is incredibly bad and I have only yesterday started to jot things down in a diary I'm afraid. My tapering down since april last year has not been evenly distributed, I started with steps of 10 percent, and then went down to steps of around 5 percent, right now I'm even looking at smaller steps, in the range of 3 percent.
I used to stay on every new dose for as long as I needed to stabilize and feel ok again. The amount of time needed for stabilization varied with time.

I also made a mistake in my original post, saying I am on Seroquel XR - I'm not. I used to be, before 2017 I think, now I'm just on ordinary quetiapine, no XR.

Life stressors at the moment: A week ago I heard a really good friend of mine passed away. So that's one. Two: Involved in a recent but complicated love-affair which brings up some triggers. I also had a (not very strong) joint 4 days ago, which I normally never do, and the evening before the day of my flaring-up of withdrawal-symptoms I ate a lot of sugar.

I am sleeping. Not too well,  which is a lifelong problem and now exacerbated by the withdrawal, but yes, I am sleeping, which is good.

I am also using supplements, namely vitamin C, D3, magnesium, kurkuma and a vitamin B-complex since I'm a vegetarian. I have used the D3, magnesium and kurkuma for months now, at least half a year I think and the C and B more recently, since two months or so.

Today was a good day. Not that many withdrawal-symptoms, apart from some gastrointestinal symptoms.

[ChessieCat]

Hi libre and welcome to SA

 

Thank you for creating your drug signature.

 

5 hours ago, libre said:

I also made a mistake in my original post, saying I am on Seroquel XR - I'm not. I used to be, before 2017 I think, now I'm just on ordinary quetiapine, no XR.

 

Q:  Are you taking IR Seroquel / queticapine twice a day.

 

Please see this post:

 

tips-for-tapering-off-seroquel-quetiapine

 

dose-splitting-for-interdose-withdrawal-from-short-half-life-drugs

 

 

5 hours ago, libre said:

 

Life stressors

 

 

And you can add Covid and if you have had the vaccine, add that as well.  Consider the following:

 

How has the Covid-19 pandemic affected you?  Work, financially, relationships (isolation, not seeing family and friends), access to things that we were readily able to access prior to the lockdowns etc.  And there was also the black lives matter during this time too (not sure how that affected you where you are).  And I'm sure there have been at least one or two more major non-covid related things too.

 

Think about the last 2 years and about what things changed during that time.  Even if you were able to keep working and had no financial stress, just the "general" stress around us and the changes that have happened since the beginning of 2020 can have an effect on us.

 

Even if you have been handling it okay, or think you have been, I think that the effect it has on us has crept in very stealthily.  Things are not the same as they were and we are all having to adjust to that.  Whenever something in our life changes for the worst we can suffer grief. 

[libre]

Thank you Chessie Cat, for your answer. I have had the vaccine, without experiencing any side-effects from it.
 

 

The last two years have actually been the best of my life, I did not have to work or worry about money and I've been going through major personal and spiritual growth.

I'm feeling very dysregulated today, especially with regards to spasms and ticks that are all over the place. I fear for my airways and ability to breathe - if this is gonna get any worse it feels like obstructed airways are a very real possibility. Is there anything that can be done about this or that could be helpful with this problem?

[ChessieCat]

You are welcome.  Re the vaccine, even if you didn't have any noticeable side/bad effects, your body still had to do what it does to build up your immunity and this is additional stress on your system.

 

22 hours ago, ChessieCat said:

Q:  Are you taking IR Seroquel / queticapine twice a day.

 

You didn't answer my question.

 

13 hours ago, libre said:

I fear for my airways and ability to breathe

 

Other members have mentioned having this issue:

 

shortness-of-breath-and-other-breathing-issues

 

PLEASE NOTE:  It is mentioned in the seroquel leaflet https://www.nps.org.au/medicine-finder/seroquel-tablets:

 

Quote

 

 

Tell your doctor if you notice any of the following and they worry you:

• feeling sleepy
• weight gain, increased appetite
• feeling weak
• dry mouth
• runny or stuffy nose (particularly in children)
• indigestion, upset stomach, constipation, vomiting (mainly in elderly or children)
• swelling of your hands, feet or ankles
• blurred vision
• abnormal dreams, nightmares
• irritability
• shortness of breath, difficulty in breathing and/or tightness in the chest
• fast or irregular heartbeats (palpitations)

 

 

 

 

[Shep]

13 hours ago, libre said:

I fear for my airways and ability to breathe - if this is gonna get any worse it feels like obstructed airways are a very real possibility. Is there anything that can be done about this or that could be helpful with this problem?

 

Libre, you have this in your signature - 2018 - now: occasional use of oxazepam for sleep.

 

How often are you using oxazepam? The reason I ask is oxazepam is a benzodiazepine (sometimes called a benzo). Benzos can cause something called air hunger, which makes it difficult to breathe. 

 

Please let us know the time(s) of day you take your drugs and the dose. Also, how many times per week you are taking oxazepam? If you have the dates you've taken it over the past few weeks, that would be great. 

 

 

[libre]

I have no shortness of breath or anything like that, thank god! My fear of developing breathing-difficulties  at some point is because of the spasms that are so bad, that it feels like at some point my airways or the area around my airways can go into spasms too to such a degree that my airways will become obstructed by the spasms, making it impossible to breathe. However luckily the spasms I had yesterday-morning have calmed, so I'm alright for now.

Shep, I use the oxazepam once or twice a month I think, sometimes less, sometimes slightly more often. I dont have the dates I've taken it, I'll try to start jotting down this kind of info in the future.

Chessie-Cat, no, I take my quetiapine one time a day, before I go to sleep and must say the thought of trying to divide it to twice a day scares me a bit, because I am so used to the way I'm taking it now, because on half the dose at night it I'm certain I'll develop terrible insomnia and because I'm afraid of how my body would react if I would make this big change.

But yes, I will try to read up on it (I am an extremely slow information-processor, so taking in this kind of information can take me an unusal long time).

[ChessieCat]

38 minutes ago, libre said:

I take my quetiapine one time a day, before I go to sleep and must say the thought of trying to divide it to twice a day scares me a bit, because I am so used to the way I'm taking it now, because on half the dose at night it I'm certain I'll develop terrible insomnia and because I'm afraid of how my body would react if I would make this big change.

 

If it is working okay for you then there is no need to investigate or try anything different.  It was just that I saw this in Post #1 of the tips topic:

 

  

On 9/28/2012 at 11:19 AM, Altostrata said:

The immediate-release form is often taken twice a day.

 

[libre]

choosing tardive dyskinesia or dangerous withdrawal from quetiapine

 

Hi everyone,

 

Over the past couple of weeks its become clear that I've developed worrisome Tardive Dyskinesia -symptoms, for which the prescribed treatment is to discontinue the antipsychotics as fast as possible, because otherwise the damage and infliction will only get aggravated.

However I also suffer from severe withdrawal-symptoms, amongst which are psychosis, huge memory-problems that make it impossible to function, feelings of terror, akathisia, worrying somatic problems and other symptoms. I need to take my withdrawal so slowly that at the current rate I'd need at least 6 more years to come off of them.

So this is kind of a catch-22 it seems.

Is there anyone who can provide me with some clear thought or solid input on the matter?

Lots of thanks in advance!

Libre

 

Edited November 14, 2021 by ChessieCat
added topic title before merging with intro topic

[Altostrata]

Hello, @libre what are your symptoms of movement disorder?

 

You're taking immediate-release quetiapine one time a day? What time o'clock do you take it? When are the withdrawal symptoms better and worse?

[libre]

Hi Altostrata,

 

Thank you for responding to me 🙏🙏

 

My symptoms are a.o. involuntary tongue-spasms, rapid eye-movement, leg and arm-jerkings, neck-jerkings, mouth-movements. I’ve had symptoms like those years ago already, but somehow for some reason never really realized it was Tardive Dyskinesia, which I am now very aware of. The symptoms have also grown to a new level

of

severity. 😳😢

 

I also wondered if you know if there is anything that can be done about extreme drowsiness as a result of withdrawal? I’ve been having episodes of those before, starting around 2016 I think, increasing a lot around / after 2018 and there is a recurrence of those now. In the past they made me worried that I might actually slip into a coma at some point because of how severe the drowsiness was. I contacted my GP and the first aid back then but they said they couldn’t do anything to help me and I just had to ride it out…

 

 

 

 

[libre]

Also the TD doesn’t seem to be limited to a specific part of the day, it can pop up at any time it seems. It does tend to increase in response to stressors though, which only makes sense.

 

Tardive Dyskinesia is not a withdrawal symptom but (usually permanent) damage caused by antipsychotics. When people develop it recommendations are to get off the meds asap, cause the longer the exposure to meds, the more serious the TD. However as people taper down TD tends to increase in severity cause paradoxically the meds simultaneously create it and cover it up.

 

There is nowadays some meds that help with controlling the symptoms, which is a really great development, however because of my intense withdrawal-problems from quetiapine I feel very wary of taking another medicine cause who knows what problems that might cause.

 

If you have any thoughts on that matter that would be so helpful. 

 

Thanks again so much for responding. It means a lot to me, to receive this support. 🙏🙏🙏

 

 

[Altostrata]

TD can be a withdrawal symptom. I see you reported twitches on October 30. Was that the beginning of the movement symptoms?

 

But I was referring to other symptoms, are they more noticeable at any particular times of day?

 

Are you having trouble sleeping?

 

The dopiness may be an adverse effect of quetiapine, which can be more sedating at lower doses. What time o'clock do you take quetiapine?

[libre]

I take the quetiapine right before I go to sleep.

I dont think the dopiness is a normal effect of quetiapine, it only started after years of using it,  in a way more serious form than the usual dopiness I get from it when I have taken it. At times its been so bad I felt I might slip into a coma.
Its also not a daily or weekly phenomenon, I've gone months without and suddenly it can play up again.

I personally believe its got to do with nervous system dysregulation in response to too much fluctuation in dosages and withdrawal-related. Its disconcerting and I need to start to understand what chemical factors might be involved, so that if it were to happen again in a way as bad as bordering on comatose I know if there is anything that can be done about it...

Yes I am having trouble sleeping the last couple of days, also withdrawal-related.

My other symptoms, its not really clear to me how much they fluctuate, I try to record things but my memory is really bad so that doesn't always work out well.

Do you think the TD might lessen if I tried to also take some quetiapine in the morning? I've never done that and feel pretty apprehensive about trying to make such a big adjustment..

[hayduke]

Hi @libre

 

Sorry to hear you're having a hard time with your withdrawals.

 

Re TD, I was concerned about an incipient form of this during my taper.  I initially tried niacin and manganese supplements based on a paper I had read, and while I don't think they hurt much, I'm not sure they helped much either.

 

Eventually I found Vitamin E the most soothing for any shaky hands, and demonstrated a rock steady hand at dinner the other night as it happens.  I also find methyl folate helpful, and still take both of these most days.

 

It's important to get a blood test before just trying supplements - you don't want to throw things out of balance, and you only want to boost things if you know they're deficient.  Unrelated to TD, I found a course of B12 booster shots helped.

 

Also try one at a time, and start with smaller amounts if you are going to try these.  I would probably start with Vitamin E then try methyl folate.

 

As Alto said, this can definitely be a withdrawal symptom, and also abate.  I found I was more likely to experience tremors and flex my fingers after bigger / faster cuts, where my body would be adjusting to a larger change in dopamine levels.  Akathisia was also more apparent at those times.

 

Re 'dopiness', can't hurt to check your resting blood sugar levels when you get your next blood test.  This class of drug is notorious for inducing diabetes.

[libre]

Thank you hayduke for your answer and tips, I appreciate those!

Still if anyone has any idea about what might be happening chemically / hormonally in moments of extreme drowsiness I would very much appreciate it. The drowsiness can happen at any one moment, hours after I've taken the meds. It can lead me to hardly being able to talk anymore, with a huge double tongue, not being able of walking anymore or if I do it looks as if I'm severely drunk, intoxicated, or have had 10 tranquillizers. It worries me most because at times it feels as if I might be slipping into a coma. So any thoughts on this are muchly appreciated!

[ChessieCat]

Q:  Is your tongue swelling?

 

Q:  Is there anything else that happens at about the same time, for example something you eat / drink, or come into contact with?

[hayduke]

Quetiapine is known to be among the most sedating neuroleptics, even more so than olanzapine.  These drugs can also induce diabetes, and certainly weight gain.

 

I think the histamine channels have something to do with the drowsiness, but these drugs also act on GABA pathways as well as serotonin and dopamine, of course.

 

I slept 10-12hrs a day when I was on the higher doses and was sluggish most of the rest of the time.

 

I would be consulting a sympathetic GP in your situation.

[Altostrata]

On 11/16/2021 at 12:35 PM, libre said:

Do you think the TD might lessen if I tried to also take some quetiapine in the morning? I've never done that and feel pretty apprehensive about trying to make such a big adjustment..

 

I'm not an expert on TD, but from what I've read, once you get it, which can be quite a long time after you start the drug, your only options are to reduce the drug, go off it, or live with TD. Depending on how worried you are about TD, you may have to endure withdrawal symptoms. If you've ever had symptoms of psychosis, this can be tricky, as too-fast tapering can cause a resurgence of those symptoms.

 

Your doctor should be answering your questions about the seriousness of TD.

 

On 11/16/2021 at 10:10 AM, Altostrata said:

The dopiness may be an adverse effect of quetiapine, which can be more sedating at lower doses. What time o'clock do you take quetiapine?

 

You don't believe this? The effect of the drug can change over time and with dosage changes.

 

Time o'clock looks like this: 10 p.m.

 

Please clarify what it is you want from this site. Thank you.

[libre]

On 11/22/2021 at 10:38 AM, ChessieCat said:

Q:  Is your tongue swelling?

 

Q:  Is there anything else that happens at about the same time, for example something you eat / drink, or come into contact with?

Hey ChessieCat,

No my tongue is not swelling, thank God, that would be very worrying indeed. So far I have not been able to idenitify substances that trigger it, but I do notice a link between emotions being triggered by things happening in my life and an upsurge of the drowsiness, so there is definitely an interaction with things that affect me emotionally.

I'm sorry for my late reply, my head is chaotic and I've been preoccupied with some intense things happening in my life with regarding relations with people. I process things extremely slowly which is why it can be really hard for me to keep track of several different things happening at once that need my attention.

I really appreciate your questions, thank you so much.

[libre]

On 11/23/2021 at 2:04 AM, hayduke said:

Quetiapine is known to be among the most sedating neuroleptics, even more so than olanzapine.  These drugs can also induce diabetes, and certainly weight gain.

 

I think the histamine channels have something to do with the drowsiness, but these drugs also act on GABA pathways as well as serotonin and dopamine, of course.

 

I slept 10-12hrs a day when I was on the higher doses and was sluggish most of the rest of the time.

 

I would be consulting a sympathetic GP in your situation.

Histamine pathways, that is a very helpful suggestion, I will definitely look into that, thank you so much.

I am sorry for my late reply, like I explained to ChessieCat its difficult for me to keep track of multiple things happening simultaneously in my life because of my slowness and depth of processing. Please don't interpret my delay in answering as lack of appreciation, that is in no way the case.

Thank you so much for yourn answer, muchly appreciated.

[libre]

On 11/17/2021 at 6:03 AM, hayduke said:

Hi @libre

 

Sorry to hear you're having a hard time with your withdrawals.

 

Re TD, I was concerned about an incipient form of this during my taper.  I initially tried niacin and manganese supplements based on a paper I had read, and while I don't think they hurt much, I'm not sure they helped much either.

 

Eventually I found Vitamin E the most soothing for any shaky hands, and demonstrated a rock steady hand at dinner the other night as it happens.  I also find methyl folate helpful, and still take both of these most days.

 

It's important to get a blood test before just trying supplements - you don't want to throw things out of balance, and you only want to boost things if you know they're deficient.  Unrelated to TD, I found a course of B12 booster shots helped.

 

Also try one at a time, and start with smaller amounts if you are going to try these.  I would probably start with Vitamin E then try methyl folate.

 

As Alto said, this can definitely be a withdrawal symptom, and also abate.  I found I was more likely to experience tremors and flex my fingers after bigger / faster cuts, where my body would be adjusting to a larger change in dopamine levels.  Akathisia was also more apparent at those times.

 

Re 'dopiness', can't hurt to check your resting blood sugar levels when you get your next blood test.  This class of drug is notorious for inducing diabetes.

Thank you so much for this answer too Hayduke. I will consider trying vitamin E and methyl folate. I do take B12 and my B12 levels have been tested recently and they were fine. I also got my blood sugar levels tested and they were fine too, so thats good.

I keep my fingers crossed for the symptoms being withdrawal-symptoms and not really chronic TD.

Once again, thank you so much for answering.

 

[libre]

5 hours ago, Altostrata said:

 

I'm not an expert on TD, but from what I've read, once you get it, which can be quite a long time after you start the drug, your only options are to reduce the drug, go off it, or live with TD. Depending on how worried you are about TD, you may have to endure withdrawal symptoms. If you've ever had symptoms of psychosis, this can be tricky, as too-fast tapering can cause a resurgence of those symptoms.

 

Your doctor should be answering your questions about the seriousness of TD.

 

 

You don't believe this? The effect of the drug can change over time and with dosage changes.

 

Time o'clock looks like this: 10 p.m.

 

Please clarify what it is you want from this site. Thank you.

I take my meds around 00:30. Occasionally I take them a bit later, but I usually don't.

I am determined to get off the quetiapine yes, for several reasons, one of them definitely being the TD.

As for an expert-opinion on TD, I am trying to see if I can find another, more knowledgeable psychiatrist or expert than my current one.This is not that easy so this might take a while.

The main thing I would like to get from this site is information and education so I can make the most well-informed choices about how to proceed. Was your reason for asking me this question the fact that I hadn't responded in a while?

I process things extremely slowly, probably due to my autism. When there are multiple things happening at once in my life it is really hard for me to keep track of multiple things at once, hence the delay in responding. Like I explained to the other moderators this has nothing to do with lack of appreciation.

So thank you for your answer. It is definitely appreciated.