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Coming off Quetiapine

(21 Posts)
MagpieCursedTea Wed 30-Dec-15 21:03:58

I've been on Quetiapine for years and have come off it a couple of times and always ended up back on it. However the side effects have become intolerable and I've made the decision (after a lot of thinking and discussion with doctor, DH and my family, also seeing my psychiatrist soon).
The weight gain is the worst for me, but it's also stopped me ovulating (we're TTC our second and had to have medical help to conceive our first because of the Quetiapine). I'm convinced the disruption to my hormones has effected my mood. I've been experiencing an episode of low mood recently but also quite agitated (I have bipolar disorder).
I'm not on any other med as I was breastfeeding and now TTC (apart from PRN lorazepam).
Anyway, tonight is my first night off it. I doubt I'll sleep well, so hoping there'll be some people around to chat to. I'm quite nervous!

jennstr Wed 30-Dec-15 21:10:02

Best of luck. Im also on quetiapine, reduced from 600mg daily to 150mg. I hate the side effects of quetiapine, but don't think ill ever get off it completely(i also have bipolar disorder) I hope tonight isn't too bad, i hate when i have forgotten to take a tablet, i can't sleep, i ache, i almost feel like I'm withdrawng, its horrible.

Are you coming off Quetiapine to go on to anything else?

MagpieCursedTea Wed 30-Dec-15 21:35:43

Thanks for replying! It's a tough med isn't it? It's usually pretty good at keeping me well but I think the side effects are making me ill now if that makes sense?
Not going onto anything else. We're trying to conceive so that rules out a lot of meds and the ones that might be okay for pregnancy are ones I've tried and not got on with.
I'm most worried about the lack of sleep. That was the best thing about Quetiapine for me, regulating my sleep. Lack of sleep is a big manic trigger for me.
I've got a WRAP (wellness recovery action plan) that lists my triggers, early warning signs, things to do if u start getting ill, things that keep me well etc. So I think that will help.

CloakAndJagger Wed 30-Dec-15 23:24:16

I've come off quetiapine before and it's hard going. Insomnia is a given, but expect diahorrea, headaches and agitation as well. They ease off after a week or so, but it's not easy.

doleritedinosaur Wed 30-Dec-15 23:29:47

I came off it in July after being at under 25mg since December.

I struggle to get to sleep (baby doesn't help,) but I've lost 4 stone & I'm not moody anymore. I didn't realise that it made me so angry.

The second day I was itchy & twitchy just to warn you, but it passed. The lower the dose you can get to, the lesser the withdrawal symptoms.

Good luck with it. I wish I had come off it a long time ago.

MagpieCursedTea Wed 30-Dec-15 23:58:33

Thank you both.
The last time I came off it was when my son was born (he's 2 now) so I was all over the place anyway. I'm prepared for a long night. Thanks for the heads up on the other possible symptoms.
I'm trying to focus on the positives, losing weight being the big one. I'm also hoping I'll be able to think a little more clearly. I always say that Quetiapine has levelled my moods but made me fat and stupid.
It's interesting what you said about it making you angry dinosaur. I get very angry/agitated during mania (after the excited/happy feeling of hypomania ends), but have been very angry/agitated recently. I'd put it down to the hormone problems caused by Quetiapine. Did you notice any hormonal issues or was it something else about the Quetiapine?

MagpieCursedTea Thu 31-Dec-15 02:26:53

Getting hot and cold shivers. Seems to early for withdrawal. I feel quite tired though. Might try and sleep.

MagpieCursedTea Thu 31-Dec-15 09:14:29

Managed to doze from about 5-8. Also didn't feel the need to eat all evening/night (had my tea at 6pm, nothing after), not been able to do that for years. I feel a bit rough but doing okay. Made myself get out of bed at 8.30 so hopefully I'll sleep a bit better tonight.

doleritedinosaur Thu 31-Dec-15 11:20:58

Sorry I actually got some sleep for a bit!
I didn't realise until I'd been off it for a few weeks how agitated & angry it made me. My partner noticed the most as I was more reasonable. The side effects say it can do that & I do feel more settled now.

I think it was more the meds than the hormones or at least the hormones made me more aware of the effects.

MagpieCursedTea Thu 31-Dec-15 11:42:30

Never apologise for getting sleep! Have you been struggling with sleep since you came off the Quetiapine?
Glad to hear your agitation has improved since coming off it.

doleritedinosaur Thu 31-Dec-15 15:43:18

Well only in the sense my baby won't sleep!

I struggle with getting to sleep but I haven't struggled once I am & im definitely feeling tired whereas before the meds I didn't.

I've just made the point of a routine before bed & trying to not go on my phone & that has helped.

My doctor said to try coming off it & see where I go to & could always back on it but I've been absolutely fine.

MagpieCursedTea Thu 31-Dec-15 16:15:30

Ah yes babies, the stealers of sleep!
Are you taking anything else?

MagpieCursedTea Fri 01-Jan-16 10:20:57

I think I got even less sleep last night than the night before. Feeling pretty grim but so pleased with how my appetite has reduced. I've eaten small meals but not felt the need to eat anything outside that. It's such a difference.

MummySparkle Sat 02-Jan-16 20:43:54

How are you getting on? I found the nausea was the hardest thing to deal with when coming off the quetiapine. But the brain fog from the quetiapine was making me so unwell. I felt so much better once it was all out of my system. Took a couple of weeks, but it made such a difference

MagpieCursedTea Sat 02-Jan-16 20:56:48

I managed to get some sleep last night by taking lorazepam and nytol. Not ideal or a long term solution but I was feeling pretty rough with such a small amount of sleep.
I've had an upset stomach and feel a bit like I've got a stomach bug but hoping I'll start to feel better soon.
I can't get over how amazing the appetite reduction is, I haven't felt this in control around food for years.

MummySparkle Sat 02-Jan-16 21:13:40

I had a tummy bug feeling when I came off sertraline. It also came on a training day at work so I couldn't even slip off discretely blush I sat for ages with excruciating stomach cramps.

When I stopped quetiapine everything slowed down for me, but I'm not sure whether that was due to the quetiapine stopping or starting new meds. I had sleepers through my meds change, so I can't comment on lack of sleep then. If you use the lorazepam for the first week or so and then see how you get on without it. Have you tried promethazine before? It's a strong antihistamine that really helps with sleep

MagpieCursedTea Sat 02-Jan-16 21:56:47

No I've not heard of it, can you get it over the counter?
I'm going to take the nytol (well it's the boots own version) again tonight but I've only got one lorazepam left so saving that for tomorrow if I sleep badly again tonight. Seeing the doctor again on Monday so will ask about help with sleep if it's still an issue. I've had zopiclone before but really didn't like it.

MummySparkle Sat 02-Jan-16 22:39:13

No, it's a prescription thing, but it's not as sedating as lorazepam, it's a lot more gentle. Last time I was using lorazepam for a week, I stepped it down to promethazine for a week before being able to sleep by myself.

I've taken night time kalms for the first time tonight, hoping they will help me sleep

MagpieCursedTea Sat 02-Jan-16 23:34:55

I tried those the first night off Quetiapine but I think it was too much of a leap down. I did feel more relaxed though. Hope they help you get some sleep!

NeitherQuietNorCalm Sun 03-Jan-16 10:22:18

Promethazine helped me too, you can get it from the chemist. Or an antihistimine called doxylamine which you can get online (it's American Nytol). I've been off Quetiapine for 4 months now after a decade on varying doses.

MagpieCursedTea Sun 03-Jan-16 10:40:56

How are you finding being off it?
I've never bought anything from American pharmacists, how easy is it? Any good websites to use?

I managed to sleep okay on just the nytol last night which I was pleased about. My jaw is very sore (I think it's tension) and have some general aches but feeling okay.

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