EveningMuffin: how to get off Quetiapine (Seroquel) for insomnia

[EveningMuffin]

Hello,

Seroquel 100 mg user here. Male 56.

I have been prescribed Quetiapine by a psychiatrist for sleep. Using it from March 2020 to this day every night for sleep. Without it I cannot sleep at all and I mean at all.

I have read the topic how to taper off Seroquel and understand the best way would be to taper off by 5-10% monthly which I understand and I am ready to do.

But my question is what about the insomnia?

Has anyone had any success of going off a sleep medication and got back the natural sleep?

Would appreciate some advice here.

 

[DataGuy]

Hi @EveningMuffin,

 

Welcome to SA. Glad you found us. Yes, natural sleep will slowly return, but your brain needs to adapt back from the altered state it acquired from taking Quetiapine. If you had sleep problems before, they will likely continue as they were previously. However, you might find that preferable to taking Quetiapine. But there is definitely hope to improve the sleep problems through non-drug techniques such as meditation, deep breathing, cognitive behavioral therapy for insomnia, regular exercise and other helpful tools. Here are some tips and topics on how to improve your sleep naturally.

 

How are you symptoms now? Had you previously tried to quit the drug more rapidly?

 

Is Quetiapine the only drug you are taking? Are you taking any supplements? Some other drugs can interfere with metabolism and can also have psychotropic effects (antibiotics, steroids, some supplements, coffee, nicotine etc.). It would be very helpful if you could create a drug history in your signature like this one. This link will take you directly to the signature. Signatures generally look like this: 

 

Example:

2001–2002 paroxetine 
2003  citalopram 
2004  paroxetine
2008  paroxetine slow taper down to 2016 Aug off paroxetine
2016  citalopram May 20mg  Oct slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg

 

This will allow any moderator or member to quickly see your history and where you are in your taper, and thus be able to help more easily without too much reading (most people here are volunteers and have other jobs).

 

Hope the tapering method here is of some help. Here is a general article on tapering antipsychotics (just published) by Mark Horowitz which you and your doctor might find helpful: https://academic.oup.com/schizophreniabulletin/advance-article/doi/10.1093/schbul/sbab017/6178746

 

[DataGuy]

@EveningMuffin: This article may be more appropriate to share with your doctor if the drug was simply given for insomnia, only problem is that it isn't open access like the other one: https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2769191

[EveningMuffin]

@DataGuy, thanks your advice.

I see in my signature the drug list I have taken/am taking.

Currently I do not take any drugs, except Quetiapine 100 mg and blood pressure medication Co-Amlesa.

Yes, Quetiapine was prescribed for sleep only. I have discussed the side effects with my doc but she was of opinion that of all the alternatives the Quetiapine was the best for me. I kind of agree because I do not want yet another drug get into the mix (Mirtazapine, Olanzapine, etc.)

I feel groggy in the morning, kind of hangover feeling (I do not drink any alcohol for 10 years already), tired feeling during the day, have my blood sugar increased a bit, and blood lipids have increased as well. Not much though, but according to what I have read it might be Quetiapine side effects.

I had sleep problems before. I could fell asleep no problems, but was waking up 3-4 am and could not sleep after that. It was going on for years and I became depressed and frustrated and was looking for help.

As a result I have no natural sleep at all, only Quetiapine knocks me out.

 

[DataGuy]

Hi @EveningMuffin,

 

Here are some tips for tapering off Quetiapine (forgot to link it in the first post). You should taper slowly, starting at around 10%, but you can taper even more slowly if you need to. This should help to minimize withdrawal symptoms like insomnia, anxiety etc. This link explains why you should taper slowly 

 

Yes, Quetiapine is known to result in elevated blood lipids, as well as a host of other side effects. The good resource for this is the FDA label, which you can find here. It may not be a complete list, but it gives you a good idea of what is possible. 

 

The important thing to know about insomnia is that although it is unpleasant, it is not harmful to your health. Taking quetiapine for sleep might ironically be worse for you, even if you are sleeping more. If you look at this post, you can see that from systematic reviews of various levels of insomnia, the impact on your health is trivial. You can see there is only a very minor increase in mortality risk, and actually sleeping more than 8 hours is associated with a greater risk than even severe insomnia. Simple things such as not exercising are also associated with a greater risk. It is much better to do something like CBT for insomnia, meditation, deep breathing, yoga or some other behavioral treatment than taking medication, if the problem is merely insomnia. 

 

[EveningMuffin]

Thanks @DataGuy.

I am waiting for a precision scales (can do 0.001 g) to arrive and will start tapering.

Will keep updating this thread accordingly.

[EveningMuffin]

Finally the scales arrived and I have started tapering.

16.06.2021 was the first day of 10% off of the initial dose (100 mg)

It might be due to the hot weather we have at the moment but I cannot fell asleep tonight.

First four days felt nothing - was able to fall asleep and slept ok-ish, as usual, but tonight it's not the same. I am awake.

Could be the dose reduction effect, could be the hot weather.

Let's see how it goes.

 

[DataGuy]

Thanks for the update @EveningMuffin. Yes, very possible that the 10% cut was too much. If you want to wait one night to see if it was just a fluke, you can. Or you could try increasing the dose to 95mg. This will tell you pretty quickly if it was the taper or just regular insomnia. Do you typically fall asleep around the same time every night? How often would you say you have trouble falling asleep? 

 

If you are starting from a point of symptom stability, reducing the drug should be very manageable as long as you are going at the right speed. You want to avoid going too fast and allowing your withdrawal symptoms to intensify. This can lead to a sort of nervous system sensitization, which can produce lasting problems in some people, and make the rest of your taper more difficult. For this reason, it is much better to go too slow than too fast.

[EveningMuffin]

@DataGuy, thanks for following my thread.

Usually, quetiapine knocks me out at the same time without a glitch. 10 -10:30 pm. No trouble falling asleep.

Last night it was past midnight already when I fell asleep, after a small binge. I do not blame seroquel much though because I have a weight problem besides it, but it definitely does not help.

Let's see what happens tonight. It's still very hot and I'd rather blame the weather.

 

[EveningMuffin]

it's not that hot anymore and my sleep has stabilized.

Since I have to wake up around 7 a.m I have started to take 90 mg earlier at abt 8 p.m. In about 1-1.5 hrs I feel quite sleepy and I sleep.

I hate the groggy and hangover feeling waking up so taking the quetiapine earlier helps a bit in that regard.

I'm waking up earlier, at 6 a.m and I can still get asleep till abt. 7 a.m. The sleep is not good though in that hour so maybe it's better to get up at 6 a.m.

But I manage 7 - 8 hrs! It's a shame it's under the drug though and i wake up during the night several times.

I would much prefer 5-6 hrs my own sleep I think.

 

I am shaving the 100 mg pill with a finger file till I get to 90 mg. Currently I manage, but I am thinking what will I do when the dosage gets lower?

I will have to crush the pill and weight the powder somehow? Or better to start a liquid taper?

 

Having read some on this forum I suspect that my crisis which started Feb - march 2020 was not a depression episode but a cold turkey from Trazadone/Halcion/neurontin/lamictal coctail which I was put on. I stopped them all almost at once.

It was crazy - I went to a doctor complaining about insomnia and low mood and was put on that coctail of drugs.

I am at least happy that I started the research on my own and found out a lot about these drugs and found this forum.

 

 

 

[EveningMuffin]

Last night took my dose as usual at 8 p.m, went asleep abt 9:30 pm.

Woke up at 0:30 am with an anxiety.

Was able to go alseep again listening to some voice on the phone. think I was awake for an hour or so.

Slept till 7:00 am after that. So the sleep hours are quite long, with interruptions, but not restful sleep.

Woke up feeling tired, groggy and sedated. Hate this feeling.

 

[DataGuy]

On 7/5/2021 at 1:22 PM, EveningMuffin said:

Having read some on this forum I suspect that my crisis which started Feb - march 2020 was not a depression episode but a cold turkey from Trazadone/Halcion/neurontin/lamictal coctail which I was put on. I stopped them all almost at once.

It was crazy - I went to a doctor complaining about insomnia and low mood and was put on that coctail of drugs.

I am at least happy that I started the research on my own and found out a lot about these drugs and found this forum.

 

 

@EveningMuffin I can confirm that is indeed a crazy cocktail of drugs to put someone on, regardless of your symptoms. There is really no evidence for that combination in any clinical trial. You're very lucky that you don't have worse withdrawal symptoms from stopping those drugs. I'm surprised you are still able to sleep 7-8 hours, even taking Quetiapine. 

 

Yes, you can either crush the pill or convert it to a liquid, depending on what type of Quetiapine you are taking. You can see some details about that here: Tips on tapering quetiapine. 

 

You may want to try cutting 5% next time to see if that is a more comfortable pace for you. There is no real advantage to tapering quickly, especially if it disrupts your sleep and functionality. I'm sure your body would much prefer natural sleep as well, but there isn't any shortcut to get back to that, unfortunately. Probably the quickest route is to taper slowly and allow your system to adapt to life without the drug before cutting the dose again. Overly rapid withdrawal tends to result in withdrawal symptoms that are both more intense and longer lasting, likely due to causing a nervous system injury that your nervous system needs to heal, in addition to the system having to correct imbalances caused by taking the drug (upregulating and downregulating various receptors etc.). 

[EveningMuffin]

Does anybody here think that it would be better if I asked my doctor to switch me to another drug to avoid taking quetiapine? It's a terrible drug. The more I read about it the more anxiety I get. Or should i just go on about my  tapering now? And stop reading! 🙂

[JohnBanes]

If you got serious withdrawal effects from tapering quetiapine, I would go easy and not switch all of a sudden to another drug.  Remember, however, most people get only mild and/or transitory withdrawal effects (sadly, I am not one of them).  If you are in that lucky camp, you could switch from quetiapine quickly.  People react to these drugs (and coming off them) differently. 

 

I am sorry you are having trouble sleeping, that can really erode functionality. 

[DataGuy]

Hi @EveningMuffin,

 

Unfortunately there isn't much information on switching away from Quetiapine. If you did, it would have to be another antipsychotic, and there is not any agreed upon "safe" antipsychotic that is easier to taper. Since there is not much data, we don't really have any idea whether it would help you. The process of crossing over from one to another might be time consuming and difficult in itself, since these drugs all have different pharmacological profiles. If you find you cannot taper Quetiapine even at a very slow pace, then it might be worth considering a switch. Quetiapine and Clozapine both have reputations for being difficult to taper based on some unique pharmacological properties, which Chouinard mentions in this article: Antipsychotic-Induced Dopamine Supersensitivity Psychosis: Pharmacology, Criteria, Therapy.

 

Best to just try and keep things at a slow and manageable pace. If the tapering seems too stressful, it may be better to slow the pace so you are more comfortable. You want to avoid destabilizing yourself when you are just starting out, otherwise the rest of your taper might be made both slower and more difficult. You can always try to incrementally increase the pace later once you have settled in. 

[JohnBanes]

To DataGuy's post, I would add a third second generation AP that is particularly difficult to taper from -- Olanzapine.  So if you are switching from Seroquel (i.e., Quetiapine), I would avoid Clozapine and Olanzapine. 

[EveningMuffin]

@DataGuy and @JohnBanes, thank you both for dropping a line.

I would say it's not difficult tapering. Currently on 90 mg, soon to be another 10% off. of course I would like to do it quicker.

I am sleeping long hours, but it's hot again and my sleep is broken. I am waking up many times during the night.

My thought of swithing to another insomnia drug comes mostly of reading how bad a quetiapine is and the longer I stay on it the more I dislike it.

I know my worries mean nothing - the damage from quetiapine is already probably done and nobody knows what the future will bring.

My current doc is reluctant to a switch (I mentioned it earlier). But I remember a period when she was on a holiday another lady doc mentioned a possibility to switch to Mirtazapine.

From what I have read I understand that Mirtazapine would have less collateral damage maybe.

Not sure how to proceed.

probabaly just should keep tapering off quetiapine. 🙂

 

[JohnBanes]

I am sorry to say this, but prescribing seroquel for insomnia is borderline irresponsible.  The drug can have serious side-effects, and there are many drugs with gentler side-effect profiles if you do choose to go the medication route.  Mirtazapine at low doses as well as other antihistamines are one option.  Trazadone at low doses is another.  But again, you would want to see if you want/need drugs before making this choice.  Outside issues like sleep apnea, the most effective and long term interventions for insomnia are behavioral (e.g., reducing caffeine intake after noon, avoiding drugs, getting good exercise, keeping a healthy diet, avoiding screens before bedtime, etc.).  I think your current doc isn't doing you any favors by being reluctant to switch.  And it's wonderful that you are able to tolerate the 10% decrement well.  When tapering off clozapine, olanzapine and seroquel, broken sleep is common (although this may be due to the heat or other factors -- you know best if your sleep tends to be piecemeal). 

 

[EveningMuffin]

@JohnBanes, thanks yours.

I had one night experience without my quetiapine - could not sleep at all, completely awake all night.

I have a job and the day after the sleepless night was extremely hard. I have to sleep to operate normally.

By slow tapering my hope is that the natural sleep might return. From this forum I understand that's possible.

I could ask my lady doc for Mirtazapine to try how it works for me.

I understand that I might be looking for the trouble though - putting another drug into the mix, can destabilize me.

Altostrata in one of the forums wrote that better was to keep it KISS.

Maybe I should look for the second opinion with another doc. I will think about it.

 

[DataGuy]

Yes, I'd recommend you just keep tapering the Quetiapine, @EveningMuffin. While another antipsychotic could in theory be less damaging, different antipsychotics will have different receptor profiles, and medications in different classes, like mirtazapine, have much different receptor profiles. So to switch to another AP or to mirtazapine, you would need to slowly reduce the Quetiapine while slowly increasing the other medication, essentially going through a sort of withdrawal to get to the other med, after which you need to go through a second withdrawal to get off the med you switched to. It may work for some people, but it's pretty questionable whether that would 1) result in a quicker withdrawal  2) cause less damage and leave you in better shape when you get off.

 

It's likely easier and less time consuming to simply taper the current med as best you can, if you find you are capable. You can see the receptor affinities for mirtazapine and quetiapine here and compare them. They are quite different. While quetiapine will have modified the brain in one way, mirtazapine will modify it in a slightly different way. When coming off the quetiapine your brain is trying to adjust back to normal, say by downregulating histamine and dopamine receptors. When switching from quetiapine to mirtazapine, your brain will need to adjust to coming off quetiapine while also adjusting to accommodate the mirtazapine. In theory it might be a bit of extra work. It is also pretty untested. Not saying it couldn't work, but as with most interventions in medicine we should assume it will fail unless it is shown to work in high quality research. See this explanation for why that is the case. 

 

 

 

 

Edited July 15, 2021 by DataGuy

[EveningMuffin]

Thanks, @@DataGuy, for your ideas, as usual.

Having read more on this forum about Mirtazapine withdrawals, decided not to ask my doc for a switch. It's a beast of it's own.

Will continue quetiapine taper and hope for the best.

[EveningMuffin]

Toninght I made the second cut of 10 %.

And I am hit by a complete insomnia. It's very hot again here, maybe I should have waited to make the cut, I am soaking in sweat. Everybody struggles to sleep in this weather.

Also, I am not sure this finger nail file shaving method works. The shaved 100 mg pill looks too small to me, it's almost as if it's cut in a half. See the picture attached.

I also attached a picture of the spreadsheet I use to determine the weight for the pills. 1 pill of 100 mg quetiapine weighs 0.260 g or 260 mg as per my scales. 81 mg pill weighs 211 mg.

Something is tellling me that I better try the water titration method, but I have got neither calibrated cylinders nor syringes to do it right as far as I understand from this forum.

It looks like I will have a hard saturday.

If it keeps hot like this, I will put myself back on 90 mg again, wait when the weather temperature drop and meanwhile look around for syringes/cylinder stuff.

Birds have already started singing meaning there is no chance of getting a sleep at all.

It's 4 am already and I do not want to sleep

 

[DataGuy]

Sorry to hear @EveningMuffin. I've been there, with zero sleep. Not fun. 

 

I think the best solution is to get back to 90mg. Get back to stable sleep, then when you cut again, only cut 5% (or less). If you are having total insomnia that is a pretty big red flag that the cut you are making is too big, hot weather or not. 

 

All of your calculations look correct. The pill looks to be about 80% of the full pill to me, so not sure anything is going wrong there. I also used the pill shaving method, but I unfortunately didn't know anything until I was long finished my taper. I think you need to take advantage of knowing what the consequences can be and be very careful with your cuts. No sense destabilizing yourself this early on. Once you get into a steady rhythm with cuts and knowing what your symptoms should feel like ("withdrawal normal") then you can push things a bit if you like, but when you are just starting out your taper it is best to err on the side of caution. Of course I don't know if a full night of insomnia would be typical for you when the weather is hot, but even if it is, I still think it makes sense to be suspicious of the taper. 

[EveningMuffin]

Hi @DataGuy, thanks for the quick answer! :-). I read through your thread and saw that you have been and still are through a lot! And thanks for keeping up with me.

Yes, I will go back to 90 mg; hopefully, get back sleeping again and keep it while this hot weather lasts.

This is a marathon, not a sprint, understand it now.

Will revert.

[DataGuy]

Yes, definitely a marathon. Do your best to protect your health and get to the end in one piece. Luckily this is a marathon where most people win : )

 

Appreciate your comment @EveningMuffin. Will respond eventually when I update 🙏

[EveningMuffin]

A small update.

I did not go back to 90 mg but the next day took 85.5 mg (thats 5% off) and currently stay at that level.

It was very hot for a couple of days and my sleep was not good but I blame the weather for that. But ofc it could have been the dose reduction as well.

Now, for the last days my sleep is ok, falling asleep is ok but I am waking up earlier than usual - usually at 7:00 am, but now a bit after 6 / before 7.

last hour(s) of sleep is/are not very deep - I kinda feel my surroundings.

My plan is to go as this forum recommends - after each dose reduction (5% or 10%) to see how I feel and stay at that level for four weeks.

Will revert.

 

 

[DataGuy]

Sounds good @EveningMuffin. If insomnia is your main symptom, important to pay attention to that and keep it as stable as possible. This will help make your taper as smooth as possible. Withdrawal can also result in some temperature regulation issues, so keep that in mind if you are feeling hotter than normal given the temperatures. 

[EveningMuffin]

Thanks, @DataGuy, for your input.

I had a phone chat with my doc  and asked her about how to get my natural (bad) sleep back.

To my surprise she said I had to taper off very slowly and gradually to try to get it back. She said she had in her experience people who had successfuly done do.

Also, she was still of opinion that to stay on quetiapine is the best course of action now, not to mix other drugs in.

So, staying on, tapering and hoping that it will sort out.

 

[JohnBanes]

Sounds like you have a rarely reasonable psychiatrist.  I wish you patience and peace in this long, hard journey.

[DataGuy]

Yes, seems you got lucky with your doctor, @EveningMuffin : )

[EveningMuffin]

Hi all,

Currently on 77.5 mg. Switched 10% off of the last dose. Shaving my 100 mg pill.

I can fall asleep OK but towards the morning I feel the sleep is becoming less deep. I am asleep but like I feel my surroundings and noises in the house/on the street.

The pattern is like it was before any medication - I was able to fall asleep but was waking up at 3:30 - 4:00 am and could not sleep after that.

Maybe I feel less of the hungover feeling in the morning and maybe a very slight headache from time to time. Most probably it's because of the dose reduction having a withdrawal effect.

Otherwise so far so good. Let's see how it goes.

 

 

[DataGuy]

Yes, you are doing very well @EveningMuffin. Have already reduced 23% in a couple months. Maintaining sleep to an acceptable degree. Just remember to slow down if your sleep starts to worsen. Still sleeping 6-7 hours? You would expect some REM rebound from withdrawal, so less deep sleep, more dreaming, maybe more vivid dreams. The most important thing is to listen to your body and adjust accordingly. Thanks for the update EM : )

[EveningMuffin]

Thanks for the feedback, @DataGuy.

23% - maybe it's too quick. I really do not want to get into the trouble.

I will hold now for a month at least at 77.5 g and hope that my sleep improves.

Yes, I get 6 - 7 hours although the last couple are not deep. And it is exactly like you mention - more dreaming and more vivid dreams are what I do have indeed.

Maybe it's worth considering the Brass Monkey method where reductions are less than 10% but more frequent.

I want my natural sleep back however bad it was, I had 4 - 5 hours, it was not that bad, as I understand now. I tried to fix it by using a wrong set of tools. Always learning things.

 

 

 

 

[EveningMuffin]

Hi all,

Was third night on 69.3 mg after reduction. The first night was as ususal. But last two nights the sleep is less deep, more vivid dreams, feeling being somewhere in between sleeping and wake state.

Feeling a bit tired and a small anxiety - is it because of the troubled sleep or am I feeling withdrawal symptoms?

Some family related matters have come up and they could affect as well, in spite I am trying to ride it easy with a meditation and a stoic attitude.

These life matters will always show up, it's life. I do not want to postpone the taper till better times - they may never come.

Will try to hold now until the sleep/tiredness/anxiety improves, right?

The thing is my sleep before drugs was never great, and it might never improve now while tapering.

 

 

[EveningMuffin]

I was reading in Paresthesia forum about it's symtoms - I think for some time now (maybe from the begining of the taper ?) I have some light tingling/ithcing feeling in my left feet (a small area of the feet) which sound like Paresthesia.

At least, it's clear what it is. From that forum I don't understand if these symptoms ever go away.

If these are because of Quetiapine then they are one more reason to taper/stop it.

[DataGuy]

Hi @EveningMuffin,

 

Yes, paresthesia is a very common withdrawal symptom across many drug classes. It can also be a symptom of anxiety, and many doctors will diagnose it as a symptom of that rather than withdrawal. If it is merely a withdrawal symptom, it will likely go away, although it can take quite awhile. I experienced quite a bit of paresthesia in my withdrawal, but now rarely have it and if I do, it is pretty mild. 

 

It's good that you are taking note of when the lighter sleep starts after a dose reduction. This way after a cut you can have an idea of what to expect. Perhaps if you start to feel lighter sleep or more vivid dreams on the 4th or 5th night, this will be ok and you will stabilize on that dose, but if you experience it the 2nd night you will know this is a prelude to more insomnia and shorter sleep (just an example). 

 

I get the impression that this level of reduction is really pushing it, and I don't think the goal should be to reduce at maximum speed, especially near the start of the taper. Much better to run it like a race, start slow and slowly increase until you hit a pace that you can tolerate long term. If you start out at maximum speed and keep having to cut back, not only is this discouraging, but your legs start getting heavy near the middle of the race with lactic acid and slow down your entire time. May be best to make 5% cuts per month until you are comfortable. Then if you feel it is a good idea, you can increase the cuts a bit. This will also get you habituated to the withdrawal symptoms you can expect, and any additional symptoms or any increase in intensity of symptoms you can be fairly certain is withdrawal. The goal is not to push as much as you can tolerate. I think people mistakenly think that it is beneficial to suffer during the taper. Maybe it is, a little bit. But if you are living on the edge or feeling precarious on a very regular basis, this is probably a sign things are going too fast. For some people feeling like that is unavoidable, but I think if you can be more comfortable throughout the taper, then you'll likely experience a better outcome  at the end - in addition to suffering much less : )