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Weaning off Quetiapine

8 replies

Shleepymummy · 19/06/2024 20:40

Just wondered if anyone has had experience with this and how they managed.
I have been on Quetiapine now for 1 year after the birth of my son. The drug is used in high doses for schizophrenia but in low doses it is used for managing anxiety and more specifically for me, to help you sleep. After my baby was born, I just couldn’t sleep, couldn’t physically sleep despite being exhausted. This medication was used to calm my anxiety and help reset my
sleep pattern. I was initially on what is apparently very low doses- 50mg in the morning and 50mg at night but after a few months dropped down to 50mg at night only as the morning dose just wasn’t needed. This drop was fine-no issues. Then I wanted to wean down from 50mg at night to 25mg, again this was easy and I had no issues.
The last 2 months I have tried to wean from 25mg at night to 0, so I can be off the medication as I am not anxious and my sleep is healthy and normal again.
I am getting awful nausea, dizziness and tingling in my fingers/itching from trying to come off the medication to the point that my days are miserable feeling so sick. I have tried taking the 25mg every other night, or every 2 nights, or taking half a pill (17.5mg) every night or every other night to try and slowly wean my body down but nothing is working. I’m not anxious, my sleep is good but the side effects from coming off are so bad that I feel I need the medication again to just feel better in the day time! The nausea is particularly bad.
My GP hasn’t been very helpful and getting an apt to talk about this is near impossible. Has any one come off it completely and if so how? How long did it take? Did you just put up with the sickness/side effects and battle through.
thanks in advance!

OP posts:
Rustnot · 22/06/2024 08:29

Not quetiapine, although I do take it, but I came off venlafaxine and went through a horrible withdrawal for about 10 days?
I found sugary drinks and crisps helped with the sickness. It wasn't nice but it didn't last forever. Have you tried taking anti sickness tablets? Can you get extra help with the baby while you get through the worst of it?

Shleepymummy · 23/06/2024 11:32

Thanks @Rustnot how do you find taking the Quetiapine? Part of me thinks maybe just don’t come off it…?
Good point about it not last forever, maybe I just need to accept a week or so of feeling crap and it’ll be over.

OP posts:
dangermouseisace · 23/06/2024 17:22

I came off it with no problems apart from no sleep. 150mg to 0 boom. Which does not help you! I’m on Venlafaxine too which is horrific to come off and has the side effects you say. I know when I’ve forgotten a dose when the overwhelming nausea kicks in.
The withdrawal goes away eventually though.

WitchyBits · 23/06/2024 17:37

Quetiapine is an antihistamine and when I stopped taking my body was horrifically itchy, like so bad I actually tried to take the cheese grater to myself. So take a different antihistamine as you are coming off it to avoid a ginormous histamine dump .

Your sleep will likely never be the same again. Ten years on and I'm still struggling with a poor sleep pattern but I was on 500mg for 5 years.

I wish you luck. It's a fucking horrific drug.

Rustnot · 23/06/2024 17:43

@Shleepymummy I take it for bipolar rather than sleep. To be honest if I could be medication free then I wouldn't take it but I'm not in that place at the moment. I also worry about coming off it at some point but that is probably a way off. Good luck with it!

Genegeniehunt · 24/06/2024 10:42

I take 450mg of the slow release version every night. I have taken it for 14 years and its the worst thing ever to try and stop. ive tried to stop taking it a few times and every time its pure hell. no sleep whatsoever, not being able to sit or lie comfortably, nausea, profusely sweating whilst feeling cold and not being able to eat. I have no idea how anyone is meant to get off this stuff without suffering. Good luck.

Shleepymummy · 24/06/2024 21:42

@WitchyBits thanks for the tip, I hadn’t thought about how to manage the itchiness, the nausea seems to override that! I really hope my sleep will be ok, it seems to be ok on 17.5mg every other day at the moment but maybe that’s enough to keep sleep in check. I’ll have to go back on if sleep gets worse.
@Genegeniehunt I’m sorry you have struggled to come off it. It seems very unfair doesn’t it, you take the drug as you need it to help you in that moment and then when you feel you are ok and don’t need the drug anymore, it’s almost impossible to come off so you’re stuck. Maybe you could just lower the dose mega slowly over months, if it’s something you want to do

OP posts:
WitchyBits · 25/06/2024 09:41

For anybody struggling to reduce dosage, if you can find a compounding pharmacist near you then they can give you a liquid form for your prescription and that means that you can slowly reduce your dosage over weeks by tiny amounts every night instead of taking it then dropping down in big chunks ( which is what our bodies seem to object to).

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