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

[DataGuy]

I would also add that I don't think your post-medication sleep situation is necessarily hopeless. I'm sure there are plenty of behavioral techniques that you haven't tried, and I don't know what was going on at the time the sleep problems began. Sometimes people do activities that society perceives as normal but which can cause problems in some people, like drinking coffee regularly, eating late, drinking regularly, smoking, lack of exercise etc etc. or sometimes psychology can takeover and the worry about sleep also causes problems with sleep. Remember that there are always many potential causes of the problem, and therefore many potential solutions : )

[EveningMuffin]

Thanks @DataGuy for the feedback.

I think I could try 5% reduction next time and see if the change is more smooth. Then I could try to do next 5% in 3 weeks (if I am stable and without symptoms) so the 10% reduction is achieved in 6 weeks not 4.

Of course I am eager to get rid of this @$%t as soon as possible, but also understand the need not to screw it up.

I remember how miserable I was when I CT from my coctail and I am reading this forum and see how people struggle.

Regarding my post-medication sleep - I do hope I would be able to sleep without the drugs trying no-medication methods.

last two nights sleep was ok, less deep sleep towards the morning, as usual, getting 6-7 hours.

Small anxiety/iritability and a bit of rumination/saddness. Otherwise ok.

 

[DataGuy]

That sounds good @EveningMuffin. I think once people get to this stage they all are very impatient to get off the drug. I know I was. But getting off too quickly can be a huge mistake you regret for years. You are doing great, having reduced more than 30% and still sleeping 6-7 hours. Just need to keep it up

: ). I think more frequent, smaller reductions are probably easier for the body to handle, anyway. 

[EveningMuffin]

Hi,

Sleep has definitely become not so deep and I am waking up few times during the night.

Duration roughly the same though. The hangover and drugged feeling in the morning is definitely less or almost non-existent. Either I have become used to Q or the smaller dosage works better.

I have read that the smaller dose of Q the stronger the sedative effect should be but I have not felt it that way.

To deepen the sleep I will try to wean me off the caffeine - I do coffee in the morning only, but 3-4 coffee cups could be too much.

I was off caffeine once many years ago for 3 years. Honestly, I don't remember that I slept better without coffee. I do remember I had unpleasant withdrawal symptoms for 8 - 10 days without coffee. I did CT then. And I am not sure I would like those symptoms felt again.

 

[DataGuy]

Sounds good @EveningMuffin. Caffeine is definitely working against you if you are trying to get your brain to adapt to life without the drug. I would argue that no one on a psychotropic that has sedative effects should be drinking caffeinated coffee, very self-defeating and potentially harmful. There is a bit of research showing that caffeine may be neurotoxic itself and seems to enhance the neurotoxicity of sedative, anesthetic and anti-epileptic drugs (SAD). Although Quetiapine is not in this classification of drug, I don't think I would want to chance that it may have a similar synergistic interaction with caffeine. And you're right, important to wean slowly off the caffeine. 

 

The Quetiapine is sedating at lower doses but I don't know that it gets less sedating as you get higher...The histamine receptors are the first on the cascade to become saturated, since Quetiapine has the highest affinity for the H1 (histamine) receptor. Once that is relatively full, it does not bind there quite as preferentially and moves on to other receptors, as explained energetically by this typically deranged psychiatrist in a blog post from 2007.

Edited September 24, 2021 by DataGuy

[sacredohana]

Hello @EveningMuffin I’m new here and have been following your seroquel tapering journey and insomnia with interest as I was prescribed Quertiapine as an off-label sleep aid. I have reduced to 50mg now and holding. 

Well done for coming this far.

I decided to come off caffeine about 18 months ago by slowly swapping out caffeinated coffee grinds for decaffinated coffee grinds in my daily brew. It worked a treat with no withdrawal symptoms at all and I still get to enjoy the coffee ritual and taste. I’d be mindful of doing anything too drastic as I am learning how raw and sensitive our nervous system has become and you don’t want to do anything to disturb it. While not the complete solution I believe the quality of my sleep is much deeper without the caffeine in my system.

Wishing you all the best and deep sleepy nights.

 

 

[EveningMuffin]

@DataGuy - thanks your input, as usual, very helpful and encouraging.

I agree, I get this kind of feeling that coffee is self-defeating, as you put it right. I'm starting to feel the same about the coffee I had many years ago (25 years already, in fact...time is running... sigh) about smoking - I was smoking and feeling stupid doing so. It helped me to finally stop the habit, CT, but I was ready to stop. Not smoking for 26 years already.

I do hope that you are feeling better yourself too, thanks for the support indeed.

@sacredohana, thanks your feedback about your experience with getting off of the coffee. I will try mixing initially as well. And congratulations on dropping to 50 mg! I'm looking forward to that number as well. It would be a kind of milestone number for me. How do you sleep on 50 mg comparing to 100 mg? Do you stay on 50 mg waiting for the sleep to improve? I see you are on quetiapine not very long.

Wishing you both all the best!

[Colonial]

 

Hi, just be aware that  chemicals used in the decaffeination process can be a trigger for migraines in many healthy people so if you make the change over and you don't do well, it may be best to make a regular cup and just drink half of it to wean off the caffeine.  If you don't notice any side effects, other than the ones listed, you should be ok.

 

I suppose with everything else, as the one article says, it's just best to go with the organic and not risk adding another toxin for your WD symptoms to have to deal with.  Good luck!

 

Is Decaffeinated Coffee Bad for You? - Consumer Reports

 

5 Unexpected Side Effects Of Decaf Coffee You Must Be Aware Of (stylecraze.com)

[sacredohana]

@Colonialgood call regarding the decaf. I've also read that coffee in general is susceptible to toxins and mould and yes agree! - high grade organic all the way!

 

@EveningMuffinthanks for the encouragement. Know that I am here by your side on your journey to 50mg and beyond. 

 

I DIY dropped from 100mg to 50mg not quite knowing what I was doing. Now I am stabilising here until sleep and mood improves. Complicated by a too fast taper off an AD - Pristiq. I am working with a sleep coach that has helped somewhat and involves CBT and some sleep restriction techniques such as creating a "sleep window" that more accurately reflects the amount of sleep you are getting.  For weeks I have had one good night followed by a bad night. I have just had 2 nights of good sleep in a row so fingers crossed things are settling.  I have to be very protective of my environment and am super sensitive to stress to the point of zero tolerance.  I can't wait for a time where I can be more carefree.  If you are interested here is the link to the sleep coach...he has some great tips and videos on you tube...https://insomniacoach.com/

[EveningMuffin]

Hi,

Hope you all are doing great and recovering in your own course.

A small update - did a 5 pct cut 10 days ago. Stll getting my 7 - 8 hours sleep, it's not that deep anymore and it takes some time to fell asleep.

Usually it was other way around - fell asleep pretty quick but had a trouble staying asleep.

You all know, insomnia is may main concern. I'm trying to change my thoughts and not to be too concerned about it though.

No changes in overall feelings and mood this time, still being the same grumpy old man.

If all going well will reduce by 5% again after 3 weeks.

Stay safe all.

[DataGuy]

@EveningMuffin thanks for the update. Did you end up reducing again? I think getting 7-8 hours is great, regardless of how deep it feels. Remember, you are going to have some REM rebound sleep as your body recovers from the drugged state, and that is probably healthy. Your body knows best!

Edited November 10, 2021 by DataGuy

[EveningMuffin]

@DataGuy thanks for checking in.

Yes I have managed to reduce and now I am at 59.4 mg.

Googled about REM rebound and it seems true what you are saying. I have vivid dreams and sleep feels not deep. But maybe the deepness I had before was just being drugged by quetiapine

The hangover feeling has gone, I think, maybe due to a reduced dose or I have got used to Q. 

Otherwise I feel OK, sleep 7 - 8 hours, no other WD symptoms, maybe, just maybe, sometimes, a general anxiety, but that could also be usual life worries and difficulties playing their role.

Not sure when to reduce next though. Likely will keep to a current 5% reduction by 2 - 3 weeks, since no major WD symptoms going like that and I really do not want to risk running into similar troubles I had last year and many people  on this board have.

I still drink coffee. Honestly have not tried to get off, I do not want to change the current situation, because, I remember how bad I felt when getting off coffee years back. When I feel ready again I will do it. Maybe when I am free of this drug. Who knows.

How are things with yourself? Hang tough, I really hope you are feeling better and will get there eventually.

Stay safe all.

 

[DataGuy]

Thanks for the update @EveningMuffin. How bad did you feel trying to get off caffeine before and how long did it last? It can be quite a struggle for some people. I have suspected that once people start having trouble coming off psychotropics, they also have trouble getting off other psychotropics. Kind of a cross-drug kindling/nervous system sensitization effect.

 

Generally when people taper multiple drugs here, we recommend coming off the "stimulating" or non-sedative drugs first. I think drinking coffee with alcohol or taking it with things like benzos is particularly problematic. See this article on why that might be: https://www.nature.com/articles/s41598-018-23560-7. I can't say for certain drinking coffee while taking an AP would cause similar problems, but I think it is worth thinking about and you may even want to stop tapering the Seroquel so you can slowly remove the coffee. It may make the rest of your taper a bit easier. I hope it does, EM.

 

As for myself, I am having a heck of a time and haven't been posting much. Trying to escape a disruptive living situation at the moment.

 

Look forward to your next update. I'm glad you are still getting a decent amount of sleep : ) 

[EveningMuffin]

@DataGuy, my usual thanks for your valuable feedback.

I listened to your advice and I stopped coffee, CT! It's a third week I'm completely off. It was not pretty, I knew what I was going to encounter from my previous experience. But after 7 - 9 days it was over. Google search coffee withdrawal symptoms first searches describe everything quite precise as if it was my case. I still miss the coffee in the morning, but not much and it's harder to fully wake up. It probably will take some time to completely feel free from coffee dependence.

Slowly reduced again when most coffee WD symptoms were gone. Sleeping OK, but waking up during the night a few times, sometimes my dog wakes me up, sometimes on my own but I manage my 7 - 8 hours broken sleep.

Still having my vivid dreams, maybe less intense.

Stay safe all.

[DataGuy]

Thanks for the update @EveningMuffin. Glad you were able to stop. I don't think caffeine withdrawal has been adequately studied, so I suspect they don't quite understand the possible severity and length of the withdrawal. I did find this: 

 

"Withdrawal from caffeine causes mild to clinically significant distress and impairment of normal functioning. The severity of symptoms vary from individual to individual, and most commonly include a headache, fatigue, decreased energy/activeness, decreased alertness, drowsiness, decreased contentedness, depressed mood, difficulty concentrating, irritability, and feeling foggy/not clearheaded. The severity of symptoms varies from mild to extreme. The incidence or severity of symptoms increased with increases in the daily dose. Still, abstinence from low doses, such as about one small cup of coffee per day, also produced symptoms of withdrawal."

https://www.ncbi.nlm.nih.gov/books/NBK430790/

 

So they are aware symptoms can be extreme. Much like anything related to withdrawal, we don't have a lot of great evidence, so we kind of just need to act based on eliminating probable risks. Seems reasonable to say caffeine could be a risk for bad outcomes when combined with tranquilizers, so I think you are doing the right thing. Hope it makes the rest of your journey a bit easier. 

 

And thank you for keeping such a neat drug signature. Moderators are grateful for little things like that!

 

Hope you have a nice holiday EM : )

Edited December 17, 2021 by DataGuy

[EveningMuffin]

@DataGuy, thanks feedback and hope you are doing better than before.

Your quote/link describes the symptoms precisely - as if they were mine. Yes, coffee is a drug, and quite an expensive one! I don't think I will ever go back drinking coffee again - no mind altering substances any more.

I would say my symptoms were mild to medium (3 -4 days), not extreme. Extreme were WD symptoms from psycho drugs I experienced last year and people on this board do. But definitely I am glad it's over now.

I noticed I have a poorer sleep if I have snacked later in the evening. To improve my diet habits and lifestyle is my next ambition.

Are you improving @DataGuy? Have a nice holiday you too!

Stay safe all.

 

[DataGuy]

Thanks @EveningMuffin. Glad caffeine wd wasn't too bad. Could have been much worse! I think that is a sign you are in good shape. I am glad to hear you're swearing off psychotropics. Best to do it when you can rather than when you have no other option. Unfortunately many people on this site and others end up in the latter situation. 

 

I am doing ok, hoping to move apartments soon to a living situation that is a bit more comfortable. Very busy for the holidays. I am not normally very efficient, so having even less time really compounds things. I also need to improve my diet. Eating less pizza was a sort of goal, but I love pizza, so I compromised and made my own pizza out of healthy ingredients. I tell myself that they are healthy, anyway : )

[EveningMuffin]

Hi everyone,

Dose getting lower and I have noticed my sleep getting poorer. I am not able to fall asleep easily, it takes some time,  it's not so deep, I wake up a few times every night but manage to fall asleep again, not easily, after some time. After that my sleep is rather poor - vivid dreams and feeling being between awake and sleeping. I notice that mostly I wake up at 3:30 - 4:00 am and it reminds me of my pre-drug insomnia problems - waking up at 3 - 4 am and not being able to sleep. Before drugs, in fact, I could fall asleep easily - the problem was waking up at 3 am and not being able to sleep any more. Could it be my old friend insomnia is rising its ugly head? Or is it a withdrawal symptom? I am reducing 2.5% a week to make it 10% a month. See below signature.

Otherwise I would say I feel quite good - mood is ok, no depression, feeling positive, sometimes irritability and willingness to engage with my wife over small things, to which she says that I'm behaving like an old grandpa. Which is true since I am a grumpy old man, sure.

Stay safe all. Good luck to you all tapering and suffering.

 

[DataGuy]

Glad you are feeling better, @EveningMuffin. I don't think it is necessarily "natural" insomnia coming back. I think you have had problems before reducing too fast, so it could simply be that. I think you had an entire night of insomnia while reducing something like 10% per month? I could be wrong on the reduction amount, but you're not going much more slowly than that by reducing 2.5% per week. You might benefit from a pause and then a resumption of tapering at a slower pace. Then once you feel more stable you can decide if you want to try to gradually speed up the taper again. What do you think? 

[Carmie]

Hi EveningMuffin, 

 

Thanks so much for dropping around to my neck of the woods🌳🌳🌳. 
 

How have you been doing? Sending hugs🤗

[EveningMuffin]

Hi @Carmie, and thanks for asking.

I hope you are feeling better indeed.

As to myself I'm doing fine, I think, if I see how other people and you are suffering. I am doing the 10% a month taper as recommended here by weekly lowering abt 2.5%. @DataGuy did suggest I slow down a bit which is a good advice I know. But since my last post my sleep has improved a bit and I do 6 - 7 hours a night I decided to keep the tempo. I want so much this poison out of the system.

I admire how patient and strong you are by reducing that slowly. Let's see how I feel when I get to lower numbers.

My main concern is sleep and I do not want to suffer insomnia.

Stay safe all and hang tight.

[Carmie]

On 3/5/2022 at 1:13 AM, EveningMuffin said:

Hi @Carmie, and thanks for asking.

I hope you are feeling better indeed.

As to myself I'm doing fine, I think, if I see how other people and you are suffering. I am doing the 10% a month taper as recommended here by weekly lowering abt 2.5%. @DataGuy did suggest I slow down a bit which is a good advice I know. But since my last post my sleep has improved a bit and I do 6 - 7 hours a night I decided to keep the tempo. I want so much this poison out of the system.

I admire how patient and strong you are by reducing that slowly. Let's see how I feel when I get to lower numbers.

My main concern is sleep and I do not want to suffer insomnia.

Stay safe all and hang tight.

Thanks for your very kind words EveningMuffin, 

 

I’m so happy you’re doing fine. Going down by 10% a month is amazing!! Good for you!! I have to go soooooo slowly, otherwise I’ll get Akathisia that’s so severe, it’s horrific! I’m in constant fight or flight mode due to withdrawals, but as long as I don’t feel like I’m totally being electrocuted by Akathisia I can cope with the withdrawals. Struggling to breathe for over five months though due to an autoimmune flare from the vaccine is what I’m really not coping with. Lots of tears shed. 
 

It will probably take me to my death bed ( I’m getting old😂😂)  before I can get off these meds🙂

 

Sleeping 6 to 7 hours is really good. I hope that keeps up. I know it’s scary getting to lower doses and getting rebound insomnia. I know in the past when I missed a dose I didn’t sleep at all, so it is a real concern in the future. 
 

With me though, I have CFS, and no matter how much I sleep I wake up just as exhausted as when I go to bed. Not sleeping though may end me up totally bedbound. 
 

Anyway, all we can do is take a day at a time. 
 

Take care🤗

[DataGuy]

Hi @EveningMuffin,

 

How are you doing? Are you managing things ok? Any new developments? Hope all is well.

 

DG

[EveningMuffin]

Hi @DataGuy, and thanks for asking!

I think I'm ok. At 27.7 mg now. If I look back it's about a year since I started on 16.06.2021 from 100 mg. 

I am going a bit faster rate than 10% I think, and I have almost no withdrawal symptoms (thank God!).

I am currently sleeping 6 - 7 hours of ok-ish sleep, more hours than my pre-medication period.

My blood sugar is OK, in normal range. I tried to lose weight, reducing calories. It worked for some time but then - suddenly I cannot stop eating! 🙂

Maybe it's quetiapine messing up things.

In general, I'm happy I can taper with no WD symptoms. Main concern is sleep, of course.

Some nights are not that good, and I wake up abt. 5 a.m. and cannot sleep again, just laying down relaxing.

But those are quite rare, once a week maybe?

What about you? Are you feeling better?

 

 

 

 

 

[DataGuy]

3 hours ago, EveningMuffin said:

Hi @DataGuy, and thanks for asking!

I think I'm ok. At 27.7 mg now. If I look back it's about a year since I started on 16.06.2021 from 100 mg. 

I am going a bit faster rate than 10% I think, and I have almost no withdrawal symptoms (thank God!).

I am currently sleeping 6 - 7 hours of ok-ish sleep, more hours than my pre-medication period.

My blood sugar is OK, in normal range. I tried to lose weight, reducing calories. It worked for some time but then - suddenly I cannot stop eating! 🙂

Maybe it's quetiapine messing up things.

In general, I'm happy I can taper with no WD symptoms. Main concern is sleep, of course.

Some nights are not that good, and I wake up abt. 5 a.m. and cannot sleep again, just laying down relaxing.

But those are quite rare, once a week maybe?

What about you? Are you feeling better?

 

Wow, that is great to hear! Glad you are doing so well. A little early morning awakening is not too bad to deal with, as long as it doesn't start getting more frequent / worse. Reducing your dosage by 75% while experiencing no withdrawal symptoms is really the ideal place to be. 

 

I hear you about the eating. I have been having trouble controlling it myself. Still working on it. We had a catered lunch at work the other day and I went overboard and paid for it. I won't recapitulate exactly how much I ate, only that it was out of all proportion to my size and caloric needs lol. Maybe it is the body having an elevated need for calories due to the stress of withdrawal? Hard to say. I tend to sleep better when I am eating at regular intervals and fasting around 16 hours per day, so I'm trying to get back to that. 

 

Anyways, congrats @EveningMuffin. Your taper has really been a best case scenario. Hope you can continue until the end without much issue. Look forward to hearing your success story : )

[EveningMuffin]

It's been a while since I last posted. I'm 18 days at 0 quetiapine!

I stopped at 4 mg. I was planning to stop at 2.5 mg as recommended here on this forum but on 16 December 2022 I somehow forgot to take the small shaved 4 mg grain of Q. I did prepare the tablet but got distrcted and did not take it. I fell to sleep normally, slept my ok-ish sleep, went throught the day and on 17 December 2022 when I was about to start preparing to take the next dose I noticed that I had not taken my yesterday's pill! It was still there on the scale. I was excited because that meant I have fallen asleep and slept without the drug not noticing it!

I decided to take a risk and went to sleep without taking those 4 mg again... and so here I am 18 days later.

I am aware that WD may still come. I read at this forum so much that other people had stopped their drug and run into a WD later - even months after. I know it can happent to me too, so let's see.

It's only 18 days off but let's wait and see what happens before I can write my success story.

You can see my taper schedule in my signature that I went quicker than recommended 10% but I did not had any siginificant WD feelings, so I was very lucky. I went by how I feel and my sleep.

As to my sleep - I would say I'm back to square one - can fell asleep OK, waking up at about 3 a.m. but withing an hour or so I can sleep a again. I would say it's about 6 - 8 hours broken sleep. I don't know if and how I can improve.

 

 

[FireflyFyte]

I hope you continue to do well off of the Quetiapine! Gives me hope that I might be able to get off of Olanzapine with minimal withdrawal symptoms.

[EveningMuffin]

Thanks for popping in.

I don't see Olanzapine mentioned in your signature. I understand it's a similar drug to Quetiapine so could well be you would have bearable WD symptoms. Take it slow, as recommended, 10% or less, if necessary, and go by how you feel and sleep. As I said I was lucky and was able to go quicker. People have different reactions to different drugs. I read others have a lot of suffering. Terrible drugs, that's all I can say. They do not treat anything. They don't treat insomnia, they give you a temporal relief and then you are hooked. I managed to get off, but I know a lot of people in my circles who had become depended on these drugs and are suffering a lot.

i hope my sleep will improve because I am early in my quitting Q, but honestly chances are slim. Another proof drugs are not a solution. What is - I don't know. A grave maybe. 🙂

Good luck in your tapering.

 

[FireflyFyte]

8 hours ago, EveningMuffin said:

Thanks for popping in.

I don't see Olanzapine mentioned in your signature. I understand it's a similar drug to Quetiapine so could well be you would have bearable WD symptoms. Take it slow, as recommended, 10% or less, if necessary, and go by how you feel and sleep. As I said I was lucky and was able to go quicker. People have different reactions to different drugs. I read others have a lot of suffering. Terrible drugs, that's all I can say. They do not treat anything. They don't treat insomnia, they give you a temporal relief and then you are hooked. I managed to get off, but I know a lot of people in my circles who had become depended on these drugs and are suffering a lot.

i hope my sleep will improve because I am early in my quitting Q, but honestly chances are slim. Another proof drugs are not a solution. What is - I don't know. A grave maybe. 🙂

Good luck in your tapering.

 

 

Zyprexa is the brand name for Olanzapine so you will see that in my signature. It is an anti-psychotic similar to Quetiapine but even more powerful, I believe but I will be following the advice here and will hopefully not go through hellish withdrawals. 

 

Thank you for your support and I do hope that your sleep improves sooner than later.

[DataGuy]

@EveningMuffin wow that is such great news! You really got off quickly, but you did everything right. You tapered at the speed you needed to and adjusted based on your symptoms. Very textbook. I hope you will come back and write a success story when you feel ready. Tapering even one drug is a surprisingly treacherous path, even if it seems like it shouldn't be all that complicated or difficult. All you need to do is slowly lower the dose, and yet people experience a pretty enormous range of problems. You have managed about as well as anyone I've seen. Congrats : ) 🎉🥳

 

6-8 hours a night is great, even if it is broken sleep. You are managing much better than most. It's possible you will feel better and sleep will start to improve as your system continues to adjust to life without the drug (this process can take months or years in some people, depending on the history). In the meantime, probably best to steer clear of drugs and supplements and just allow regular old homeostasis a chance to settle in. Maybe your body will surprise you by solving the sleep problem itself : )

[EveningMuffin]

Hi everybody,

I am 50 days off the quetiapine. I am not feeling any withdrawal suffering so far, except my sleep has changed.

It looks I'm back to my pre-medication state - I can fall asleep easy but I am waking up at about 3 - 4 a.m. and have a difficulty to sleep after that.

If I do manage to get to sleep again, the sleep is broken and not deep, as if I am in a kind of meditative state until abt 6 a.m. Hard to say if I am sleeping at all. But I do feel better after those couple of hours than if I do not sleep at all after 4 a.m. So it makes 5 - 6 hours of a broken sleep currently.

From October 2019 to December 2022 - my drug time - is a complete waste of life, money, time, relationship, job, everything. Not worth a slightest thing. I even encountered a problem with renewing my driver's licence medical examination due to being on drugs - I had to go to a separate concilium to get me approved to drive a car/truck.

Good thing is that I can leave all this behind, commit to no drugs any more and try to somehow to improve my sleep without drugs, whatever that means. Hopefully, It can go only better from now on :-).

 

[DataGuy]

That is so great to hear, @EveningMuffin. I wonder if you would mind writing a success story to encourage others? You have really had an exemplary taper and outcome. This is the way doctors should do it the first time...and then we would probably not have so many problems. Please let us know how things are going and thanks so much for the update. 

 

https://www.survivingantidepressants.org/forum/28-success-stories-recovery-from-psychiatric-drug-withdrawal/