Action on Postpartum Psychosis

Quetiapine

I am looking to share experiences on taking quetiapine. It’s really effecting me In terms of extreme tiredness side effects. Overnight I am completely knocked out and then I feel awful in the morning. Absolutely exhausted, struggle walking, talking generally getting moving. I feel half asleep, my words are slurred and I find it difficult to string sentences together. I’m currently on 400mg (reduced from 500mg) which I’ve been taking for 6 weeks now and the effects don’t seem to be wearing off. I have a 6 year old and a 4 month old so I can’t function properly like this once out of MBU. I’ve been reporting these side effects to the doctors for weeks and they’ve been hoping that they would lessen once I stopped lorazepam too (which I more or less have done now but side effects of tiredness feel just as bad). Wondering what other people’s experiences are? Thank you

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Hi Louisa, I also take quetiapine and it does get easier after time and the sedating effects do lessen. Fingers crossed that this will happen soon. I know that there are some people that take half the dose in the morning and the other half at night. Maybe you could discuss this with your Dr. Xx

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Thank you, that’s helpful. I’ll mention the split dose option and see what they say.

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Hi Louisa

I took quetiapine and felt exactly like this when I first started taking it, it was horrible.

What time do you take it? I took the modified release version (so once a day) and when I was in the MBU the medication round was at 9pm, but would often be nearer 10pm. I could barely drag myself out of bed in the morning and like you could hardly string a sentence together. When I eventually told them how difficult I was finding the mornings they started giving it to me earlier and I think I took it around 6pm. This was much better for me. I was on 300mg.

I also took a low dose (150mg) as a (hopeful) preventative after having my second child and again took it early evening (7ish I think) - I was then ok for bedtime routine etc, it helped me sleep and again I didn’t feel so knocked about the following morning.

Definitely keep telling your doctors how you’re feeling if it doesn’t start getting better as you need to be able to function. If you’re not on the modified release version I don’t know if that would be any better, and perhaps think about the best time to take it?

The side effects did settle down a lot for me, I found I was mostly affected in the evenings (plenty of slurring, horrible restless legs).

The following website may be helpful - choiceandmedication.org/ncm...

I hope this helps a bit and things start improving very soon.

Take care.

Jenny x

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I’ve been on it for 6 weeks now, I’m wondering how long it took for you before it started to settle down?

I was taking around 9pm but we’ve moved it to 6pm to try to help me feel less sleepy in the morning. I’ve only been doing that a short while so I guess I need to give it a bit to see if that helps. I’m on 400mg and I’m wondering if my dose can be reduced which I assume would help too? I’ll talk to the doctors on weds ward round.

Thanks for all your advice 😊

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Yes definitely discuss it with your doctors - hopefully they can find the right balance for you quickly. I think it did take a few weeks for the effects to settle down for me (gradually improving over time) and if your dose is still being adjusted I guess it’s a case of your body adjusting too.

Keep talking to your doctors, it will get better :) x

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Thank you

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Hello LouisaRoberts78,

Jenny already has given you some great advise.

I am so sorry that you are struggling so much.

I have had no experience with quetiapine, but know that Lorazepam is a very traditional drug and used for the short term relief of insomnia and severe anxieties. Even though you have weaned off Lorazepam, it takes a while until it gets out of your system.

The combination of quetiapine with other medication could have further side effects.

Yes, I believe it its important to journalise your symptoms and explain exactly how you feel, so that you receive appropriate dosage and combination.

In the mornings for example I always used to be like a sleeping tablet and not functioning at all, thus Haloperidol and Risperidone was gradually reduced and stronger dosage transferred to the evenings. This was all under close observation and guidance with my Psychiatrist and my partner, who looked after me full time for 6 months.

I just can say, it will get better...it is a difficult time, because the chemicals have quite a few side effects and coping mechanisms for each individual does vary a lot.

Thinking of you and just to let you know, that you are doing tremendously well, looking after your children, but also taking responsibility of "self-management".

x

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Hey Louisa,

I started taking Quetiapine in 2014 when I had PP. Yes the same, awful tiredness. BUT I decided to stay on it as it did help stabilise me. I was the same and had a three month old baby to look after - night feeds were so hard and I often felt faint. Luckily my husband is supportive. I have been on various doses of it over the last four years, but after my most recent episode (a manic episode) in the summer I was put on 800mg of Quetiapine and that was very sedating. But my CPN wanted the reduction to be slow. By the time I got to 400mg I noticed huge improvements, was such a better dosage for me. I have just reduced my Quetiapine to 300mg and so far so good. I am very stable now, and I wonder if I will just stay on it! Funny isn't it.... I've taken lithium every day for 8 years!!!!! Crazy.... this funny old world of madness and medication we all live in. Best of luck, your doing so well having two children you must be so proud xxxx

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I think I might always be on Quetiapine, it's a mood stabiliser as a secondary function and they were never quite sure if I perhaps had mild bi-polar or mood disorder as well as PP, anxiety and depression. For me it originally made me really tired, they gave me the slow release in hospital but then were really weird about giving that version of it to me when I was released...because it's more expensive. I'm much better on the slow release and have managed to reduce from 600mg to 200mg. What they've said to me is anything under 300mg won't help with psychotic symptoms...but i think it helps my mood disorder. I've had to be really vocal in my care, i think they would have kept me on 600mg if I hadn't pushed to reduce. Again, you should be so proud of yourself having two healthy children. It will get better. xxx

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Thank you for all your advice, much appreciated. I have my doctors appointment tomorrow so fingers crossed for something positive and a new way forward x

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I'm same been on lithium for ages. Now doctor suggesting quetiapine post partum but I'm worried about side effects and risk of relapse. And obv coping with daily life too. So opting for lithium as well as much as I hate it 😮 But I'm sure cud be fine off it in future with quetiapine instead or even no meds. I had three preg no meds and no relapse. Even with bipolar 1 history . Doctors just leave ppl on the same meds with any reconsideration

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Hi Louisa, I was on 600mg when in MBU and wasn't able to function. It does knock you out and I found it difficult too. Are you on the slow release version? That made a difference with me. I was prescribed it in the MBU but when I was released the doctors in my area tried to make me take the normal one because it's cheaper. I made a big scene and made sure I was getting the slow release one as it doesn't knock you out as much. It's been a really important drug in my recovery but the side effects aren't great...the alternative (not taking it, is worse) in my opinion. I have come down from 600mg to 200mg over 18 months. Time definitely helps, your body gets used to it and the feelings of being completely knocked out lessen I promise. Are you on an anti-depressant to? I was on fluoxetine and when I changed to venlafaxine modified release it got a bit better. I'm a single mum and my baby has always slept really well...as far as I know. I always had fears that maybe I just wasn't waking for her. My advice would be to keep speaking to the docs, ask for the slow release version and explain that you have two young children so need it to make sure you are more alert for them. Let me know how it goes. Loads of love xxx

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Really appreciate your advice, thank you. I’ll take all of this and use it in my meeting tomorrow, fingers crossed for a positive outcome x

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Best of luck, honestly slow release is so much better and if you're not having psychotic symptoms anymore ask them about reducing. I think they are so scared will go back to being psychotic that they don't want to encourage us to reduce meds. Let us know how it goes. Will be thinking of you xx

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Hello LouisaRoberts78,

You may have had your consultation already. Hope it went well and you had some very constructive advise. It is great that you accumulated a lot of feedback on this forum as a template for effective interaction with GP.

Take care,

x

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Totally understand. I tuk a low dose post partum to rest and sleep it's v good for that up to 100mg. But above that it works as an antipsychotic and the side effects must worsen. I am currently preg and although specialist has advised leaving lithium and just going for quetiapine post partum I refused for just this reason. If u had a relapse it is different. They may have prescribed this to counter manic symptoms. But you shud be on a mood stabiliser too like lithium. They new to reduce quetiapine and stop it I think. If u are having manic/ psychotic symptoms can't you switch to another anti psychotic perhaps olanzapine which has less side effects. My exp of baby unit was horrid . They judging your skills while being on so much meds. Just be patient soon it will all be a memory. We all been through it. You will be out soon. Sort ur meds get second opinion , check side effects ect urself. Did I have doctor social worker before .Can they advise/ liaison with mother and baby unit . Good luck x

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Hi Louisa

I hope that your meeting was helpful and there was some changes made to address your tiredness?

I was on olanzapine, not quetiapine but I found it very sedating too. I would take it in the evening before bed and was dropping to sleep at 9. I didn’t mind so much as I wanted to sleep to ensured I stayed well and didn’t relapse.

The mother and baby unit staff, and the perinatal psychiatrist, are obviously specialised in treating mums with pp, so they should really know best if a change in medication may help and what they would suggest while also keeping you on the road to recovery.

Take care

Ellie

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Hi Louisa

How are you ? I was on quartiapine 800mgs. I struggled with tiredness and thought it might be the medication at the time maybe it was maybe it wasn't. What i know now is that PP is a truly horrendous illness. There is light at the end of the tunnel. I met someone in real life which helped me so much, as did this forum. I was advised to sleep as much as I needed. Which I did with the amazing help from my husband and family. It took me sixth months to complete reductions very slowly ensuring that I was well and ready for each reduction. I have now been off of medication for five months and am back to my old self. If you have questions please feel free to message me all the best Marie x

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Hi Everyone - sorry for the radio silence....I saw my consultant on weds, we’ve reduced my quetiapine further to 300mg and he confirmed it is the slow release. He says he doesn’t want to go any lower than that dose (for me). I’m continuing to take at 6pm and to be honest, I don’t feel any better yet?! I am still battling the tail end of a terrible cold which has left me with throat and sinus issues, plus I keep forgetting to take at 6pm and it’s been more like 7pm/8pm so I don’t expect that’s helping, but the sedative / zombie like feeling into the evening and early morning into afternoon is still plaguing me. I feel so frustrated by this as I honestly feel so wiped out I’m worried how I’ll cope when I get discharged in around 10 days. The biggest challenge is getting up in the morning, currently impossible before 8am and even then I’m literally dragging my whole body out of bed! How will I manage getting up at 6:30 and doing the school run with a 5 month old in tow?!

I can’t see I have any other choice except to switch meds, have no idea what the alternative is, or how long it will take to move me across (and whether that will effect my discharge date), but I must get this sorted so don’t really see I have any other choice.....grrrrr, so frustrating on top of everything else 😢

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It will get better I promise. I think part of it is in the mind too, it's such a scary feeling when you're groggy and exhausted from the meds. It certainly scared me that I wouldn't wake up for my little one or wouldn't be able to look after her properly. Just so you now. anything under 300mg won't help with psychotic symptoms...at least that's what i've been told by my psychiatrist so that might be why they don't want to put you any lower at the moment. It's all for the greater good I promise.

Coming home from hospital is really hard but I promise somehow you'll do it and get up for the school run and be fine. Think positive and take every day as it comes

Lots of love,

Natalie

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Hello Louisa

Thanks for the update. I'm sorry you have a terrible cold on top of everything you are coping with. I didn't take Quetiapine but I'm glad you were able to see the doctor on his ward round. From the replies here and the choice and medication site at choiceandmedication.org/ncm... I can see that this medication can make you very sleepy.

It must be an anxious time thinking about how you will manage when you're discharged in around ten days. I was under general mixed psychiatric care years ago as there were no MBUs. I also had problems with the sedating effects of medication and found it very hard to get out of bed. My first son was six and I recall how worried I was about leaving hospital to cope at home, especially the school run. Do you have family to help with the school run while you settle back in at home? If you are in the UK the Easter school holidays begin on 30th March for two weeks so that might give you time to organise support around you if you are discharged in ten days?

It's not easy coping with routine at home and two children but once you find the right balance of medication I hope things will fall into place.

Take good care of yourself ..... we are all here for company and support. :)

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So the doctors have agreed it’s time to try me on something else so I’m going to be moved to aripiprazole (starting 10g) - looking at the fact sheet it’s not sedating, in fact often the opposite and alerting! Can anyone share their experiences on taking this medication? Thank you

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Hello Louisa

Thanks for the update. I hope the new medication will be more beneficial when it has had time to kick in. I'm sorry I don't have any experience of Aripiprazole but hopefully there will be other mums here to share their experiences.

Take care. I hope you have chance to relax and enjoy the Easter break :)

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