Quetiapine withdrawal, anyone been through it?

P

poppit

Member
Joined
Jan 30, 2014
Messages
20
Location
staffordshire
#1
Hi all, This is my first post on the forum although I have cruised around on the boards which I have found invaluable. I am currently tapering off my medication on doctors recommendation, was taking 100mg and now taking 75mg for the past two weeks. Had zero problems starting the medication, all was fine, but tapering is quite another matter:low: I have researched online and seem to come back with answers over the mental but not physical withdrawal, I have had a migraine for a week, insomnia, blurred vision, twitches and general aches, just wondering if anyone else had gone through this and come out the other end? feeling pretty down:cry: Thanks everyone x
 
anouska

anouska

Well-known member
Joined
Jan 13, 2013
Messages
859
Location
UK
#2
Hi all, This is my first post on the forum although I have cruised around on the boards which I have found invaluable. I am currently tapering off my medication on doctors recommendation, was taking 100mg and now taking 75mg for the past two weeks. Had zero problems starting the medication, all was fine, but tapering is quite another matter:low: I have researched online and seem to come back with answers over the mental but not physical withdrawal, I have had a migraine for a week, insomnia, blurred vision, twitches and general aches, just wondering if anyone else had gone through this and come out the other end? feeling pretty down:cry: Thanks everyone x
Hi Poppit, Welcome to the Forum.

Yep, I used to take Quetiapine, 600mg. My Consultant Psychiatrist would not support me tapering down from it, because he didn't agree that should. Fair enough, he was only doing what he thought was right & his job.
I tapered down on my own and suffered terrible withdrawal side effects. I can't even begin to tell you how awful I felt. For one, I was doing it alone and so had no real safe knowledge. The withdrawal was severe migraine ( so severe I was bed ridden), sickness, insomnia,.. list was pretty endless really. It surprises me that I wasn't admitted to general hospital. I stayed in bed all the time, other than getting up to use the loo & short basic hygiene at the time. It took quite sometime to leave my system. Found it incredibly difficult. I can empathise xx I'm really not sure what to advise. Other than, I hope it's OK to mention a member here called [[ME]], she has some valuable information (links) at the bottom of her page. I only wished I had known then. xx All the best x
 
P

poppit

Member
Joined
Jan 30, 2014
Messages
20
Location
staffordshire
#3
Thank you so much for your reply, I feel better just knowing the withdrawal symptoms you had are the same as mine...yes the migraine is that bad I havent been off the sofa in 2 days, MADE myself shower but couldn't wash my hair for the pain... cant begin to imagine having to come off 600mg, 100mg easily dropped me into a sleep I could barely wake from. And insomnia sucks!! Would give anything to sleep right now.
Do you reckon i should tell my doc about the symptoms? Reason being he asked to be kept informed, but feel a bit like i am wasting time because the symptoms are withdrawal, so he probably cant do anything anyway.
Anyways enough of my moaning!! Thanks again xx
 
anouska

anouska

Well-known member
Joined
Jan 13, 2013
Messages
859
Location
UK
#4
Thank you so much for your reply, I feel better just knowing the withdrawal symptoms you had are the same as mine...yes the migraine is that bad I havent been off the sofa in 2 days, MADE myself shower but couldn't wash my hair for the pain... cant begin to imagine having to come off 600mg, 100mg easily dropped me into a sleep I could barely wake from. And insomnia sucks!! Would give anything to sleep right now.
Do you reckon i should tell my doc about the symptoms? Reason being he asked to be kept informed, but feel a bit like i am wasting time because the symptoms are withdrawal, so he probably cant do anything anyway.
Anyways enough of my moaning!! Thanks again xx
No, it's no problem & please don't think you're moaning, because I certainly don't think you are.

I don't want to alarm you, but I believe it's a serious game withdrawing from Psychiatric drugs. Sensibly they must be withdrawn safely, not the daft way I done it.
IMO, I feel that you should contact your doctor about your symptoms, you will not be wasting his time. He seems like a good caring & supportive doctor to tell you to keep him informed if any problems occur.x
 
P

poppit

Member
Joined
Jan 30, 2014
Messages
20
Location
staffordshire
#5
Don't worry it takes a fair bit to Alarm me! Yes I agree its such a big thing, took me ten years to decide to go on them and now I think by the standards of withdrawal it'll take me ten years to get off them as well :( bit sad cause they fixed everything for a while, was amazing.he has advised 25mg off every 2 weeks. Yes he is a brilliant doc I am lucky to have the support, everything he says I take as gospel because he has been a doctor longer than I have been alive! So that's 30+ years if you were curious :) x
 
|||ME|||

|||ME|||

Well-known member
Joined
Jun 1, 2012
Messages
2,151
#6
I hope it's OK to mention a member here called [[ME]], she has some valuable information (links) at the bottom of her page
It's okay with me :)

Feel I should point out I'm a he, though no worries, I've been referred to as female a few times (which confuses me tbh, but doesn't bother me :)).

Hope you're okay (I know it's all relative, but y'know what I mean) after the last thread we spoke in Anouska, I've had some time away so haven't seen?
 
|||ME|||

|||ME|||

Well-known member
Joined
Jun 1, 2012
Messages
2,151
#7
@ poppit:

The links are in my signature. The forum thread here is the most important one - please read this one first (http://www.mentalhealthforum.net/forum/thread54939.html), my posts there contain the most important stuff I have to say on withdrawal.

Here's some threads of other people's experience with that drug with me chipping in:

http://www.mentalhealthforum.net/forum/thread61076.html

http://www.mentalhealthforum.net/forum/thread60911.html

http://www.mentalhealthforum.net/forum/thread59247.html

Quetiapine is one of the three hardest antipsychotics to withdraw from (the three are very similar drugs). But people do successfully come off it. Even though it can have some horrible withdrawal effects in some people (which you are experiencing common symptoms of and from which you should recover in time) and syndromes (where things become much worse for much longer) many/most people who want off don't regret getting off in my experience.

Gently and slowly taper to reduce your withdrawal symptoms. If you have them reinstate your dose to the last one you were okay at asap, stabilise until you feel okay again, hold for a couple of weeks, and then reduce by a smaller amount. Recognise that changes in mood can be part of withdrawal, so don't automatically put emotional happenings during withdrawal down to other factors and just try to push through them. Even psychosis can be a withdrawal effect (not saying you'll have it, just that people don't realise how damaging withdrawal can be for emotional experiences and put it down to "illness" - it very often isn't and this mentality ties people into drugs who could get off them with a different withdrawal approach).

It really doesn't have to be as painful as Doctors routinely make it by giving people bad advice to come off too quickly in too big a dosage drops. If you're having bad withdrawal symptoms you're doing too fast/large a drops - that's pretty much a biological fact.

Doctors rarely know what they should about withdrawal. All are just insufficiently trained in this area. Some have the intelligence and humanity to learn from service users experiences, most write off real life because it doesn't coincide with the marketing material in their books. Don't be surprised if your Doctor seems hesitant to acknowledge that you doing what he said to do made you this ill and he becomes delusional. He might not, just be prepared. Hopefully he is good at listening, learning and thinking rationally though ... if so you really are lucky.

If it's this bad going from 100mg - 75mg you should not go from 25mg to 0mg, you're going to have to cut up tablets (explained in top thread I linked to) to avoid a worsening of your withdrawal. 25mg to 0mg is worse than 100mg to 75mg. Think in percentage terms for tapering steps. 25mg every two weeks is way to fast for you and your problems with withdrawal will in all likelihood get significantly worse if you continue to follow that schedule. I would reinstate now, stabilise, hold, and then come down in smaller increments (try 10% reduction and see how it goes). You need to tell your Doctor it's messing you up and is too fast. If he doesn't believe you and/or won't support a slower withdrawal what I personally would do in that situation is argue to stay on the 100mg to ensure the continuation of the supply of the drug to avoid the withdrawal pain and then withdraw myself sensibly without telling him during that time. But that's me, and it's not medical advice - though it is the advice of many survivors of the worst withdrawal syndromes i.e. the people who have lived through this and are the ones really inclined to fully look into it.

If after reading the links you have any questions I'm happy for you to PM me or ask in this thread.
 
prairiechick

prairiechick

ACCOUNT CLOSED
Joined
Jul 28, 2010
Messages
6,207
Location
Out of Context
#8
Hi Poppit, welcome to the forum! I'm sorry you are having such a hard time coming off quetiapine. I did some pretty stupid stuff trying to come off quetiapine my own way, but now I am doing it gradually under my psychiatrist's supervision. I'm surprised that reducing by 25 mg has made you so sick, but then, that is a quarter of your dose. Can you decrease in smaller increments? That might make it easier. I am also gradually introducing abilify while coming off quetiapine, so perhaps that is making it a bit easier, although I was decreasing Q for quite awhile before I started A. Hope you can get it sorted soon. It's no fun being that sick.
 
P

poppit

Member
Joined
Jan 30, 2014
Messages
20
Location
staffordshire
#9
Hi all thanks so much for your replies:) some excellent advice given out and I truly appreciate it. ME.. thanks for the time and effort you have put into that post, will have a good read of the links. My doctor is good, although he did say that I could go cold turkey if I wanted but he wouldn't recommend it, thankfully I wasn't up for that at all! He told me to go back if anything worried me, that the door was always open. Prairie chick.. yes I was also surprised how such a small reduction would affect me, especially as it took zero effort to to increase by 25mg! I am pretty sensitive to medications, my doc started me on 10mg and worked up very slowly, the same with Citalopram. I think I said earlier in the thread that it knocked me clean out at only 100mg, I think I would never wake up again if it was any more! Worst symptoms have gone for now... dreading reducing to 50mg:unsure: I am so glad that ME put about the drop from 25 to zero, I will definitely split my tablets like he suggested. Thanks again all, will update how I go then you can save me again from my panic!!:cheekkiss:
 
E

Easy Rider

Well-known member
Joined
Nov 22, 2010
Messages
800
Location
Earth
#11
I went from 200mg to 175 mg due to low heart rate and had zero side effects.

I have now gone down another 25mg by myself to 150mg and again - no noticable side effects so far one week on.

Have been on it since April 2012

Also recently dropped my klonopin down from 3mg to 2.5 mg and no noticable side effects on week on.

Not sure if I plan to lower more, but would like to get to 100mg seroquel and 2mg k-pin and see if it keeps my insomnia in check (the only reason i went on the pills was chronic insomnia- I was diagnosed bipolar NOS as I was wound up at the clinic as their printer wouldn't print the list of symptoms I'd prepared.)

I am not a doctor and my behaviour should be no indicator of what anyone else should do.

I have never been psychotic or had full mania.
 
R

Rose19602

Guest
#12
Hey Poppit,
Keep in touch over the withdrawl. Many of us have been through it and had terrible problems.
That last bit is the worst.
Take it slowly. My problems were with citalopram and |||ME||| sorted me out and finally got me to understand what the hell had gone on when I withdrew.
Take it seriously. The damage can be considerable if you don't take it at the right pace.
Rely on us for support.
We've been there! It can be hell.
x
 
megirl

megirl

Well-known member
Joined
Apr 9, 2010
Messages
6,323
Location
NZ
#13
I have been on 1000mgs of it for ?18 months now.
My pdoc was decreasing it by 25mgs fortnightly.
I got down to 800mgs.
I was going through a stressful situation and couldnt cope and overwheming thoughts were off the scale.
I felt that my failure to cope seemed to be worse since decreasing the dose. I asked the pdpdoc to increase it back to 1000mgs which i am still on.
Its was my failure to cope and agitation that i believe had something to do with the decreased dose.
Would love to be on a lower dose maybe someday
 
K

Katss

ACCOUNT CLOSED
Joined
Apr 2, 2013
Messages
2,979
#14
WHat! Qutipine NOW please now...!!!?? withdrawl what no never, give me quetipine NOW!!!!please now. NOW it's needed now... why cos it's prescribed and needed.
 
P

poppit

Member
Joined
Jan 30, 2014
Messages
20
Location
staffordshire
#15
Hey all, update for you, didn't sleep at all on Sunday night, not at all tonight, but the good news is the other symptoms except for feeling sick have gone for now. Reduced to 50mg as per doc's recommendation, feeling ok, lack of sleep aside. Been feeling like old symptoms (with thoughts etc) are coming back, just trying to keep a handle on things. Katss, you sound like you are having a bad time, mine too was prescribed and needed but unfortunately after a lot of falling over, odd movements in my face, chest pain and such the doc thought it best I come off it. Easy rider, that's brilliant that you had no withdrawal symptoms, I hope it remains that way for you, I feel the lower the dose the better, but then again I was only taking 100mg!! I guess we just all react differently :)
 
R

redrachel

Well-known member
Joined
Apr 29, 2013
Messages
98
#16
I think every one reacts differently...I have recently (as before) reduced my quetiapine from 600 to 400 mg daily. I have experienced psychosis in the past-but can usually tell when I'm becoming unwell-so would NOT go below 400 without support of psychiatric team. I've had a couple of bad dreams and am a bit headachey but that should pass in a few days...My reason for reducing is because I feel I'm a bit slower with the 600. For me, it's all a question of checks and balances. But I do think that more, rather than less caution might sometimes be needed with lower doses.
 
S

suzy

Well-known member
Joined
Jun 26, 2009
Messages
1,066
#17
I was given it as an extra to help with anxiety, alongside lithium, well I only took it for around 2 weeks as my anxiety was worse. I would take my morning dose (Had to take it morning and evening) and I felt really alert, then it would wear off and I felt less aware. Like when crossing the road, just less aware of my surroundings kind of zombified.

So I thought this is doing me no good, also after my evening dose I would be awake and not able to sleep. I decided I was managing better without it so stopped it (Going back to just on lithium), main thing was insomnia for about a week. I looked it up and it is a really common thing when coming off it.

Always follow the doc when coming off :) I must admit I just stopped mine as it was doing me no good in the first place and if you can manage on one drug, stick with it. I don't really know why that pdoc gave me that drug as an extra for anxiety, I only saw him once, but I am glad I didn't actually need it.
 
Last edited:
R

Rose19602

Guest
#18
Just be sure Poppit that you don't confuse a return of your old feelings with withdrawl.
It's not always the case, but can be triggered by decreasing too fast.

It's your own nervous system and it's susceptibility to the removal of the drug that makes the withdrawl process so personal.

Mine is obviously highly volatile! I wish it was more like Suzy's. Go at your own pace and feedback any difficulties ..... or just slow down!

Obviously, that's my own ( non medical) advice. It's ultimately your choice and your body/mind.

xxx
 
P

poppit

Member
Joined
Jan 30, 2014
Messages
20
Location
staffordshire
#19
Thanks for all the advice everyone! Although I have been sorely tempted to just say **** it! and totally stop, I have re read all your advice and talked myself out of that! Sticking with the doctors plan, feel not too bad at the min. It's really hard to differentiate between what is illness and what is withdrawal as you say Miss Kitty, at the moment I am just rolling with it and giving myself time to adjust mentally and physically, I am half way there! Really dreading the reducing from 25mg to 0mg, will take even more care around that time.
 
Thread starter Similar threads Forum Replies Date
megirl Bipolar Forum 2
icecreamcake Bipolar Forum 13
Jess96 Bipolar Forum 14
megirl Bipolar Forum 33
T Bipolar Forum 2

Similar threads