Quetiapine reaction

[Isabella5991]

Hello, I’m really struggling atm. Had my meds changed a bunch and miserable. Had a bad reaction to aripiprazole- obsessive suicidal thoughts and loads physical symptoms. Came off it and put on quetiapine and having obsessive suicidal thoughts again and sleeping CONSTANTLY. I feel like I’ve had a lobotomy. I can’t do anything. I sleep all night and all day and just sit on the sofa miserable. I don’t think this is how sedating it should be. Risperidone was perfect and my original med, but gave me really high prolactin so had come off. I think olanzapine will be the next route but please tell me it’s not completely sedating? Xx

[x_Amy Volunteer]

Hi Isabella,

I’m really sorry to hear that you are struggling at the moment. Thank you for reaching out to us 💗 the tricky thing with medication is that the effects can be so different for each person, and what works for you may be really different for someone else, but I will share my personal experiences below.

The first medication I was prescribed when I had PP was aripiprazole - like yourself, I struggled with obsessive thoughts and for me, it caused insomnia and restlessness. I switched over to olanzapine after less than a month, and my dosage was tweaked a bit in the first year, but I remained on that medication for the duration of my recovery. It worked well for me. It definitely had a sedative effect, but I was able to return to work, look after my little one and get adequate sleep. May I ask about the support you have in place at the moment? Are you receiving regular support from mental health services currently?

I really hope that the next route for you is a positive one, and please do keep us posted.

Sending you very best wishes - Amy xx

[Isabella5991 in reply to x_Amy]

Thanks Amy xx

Im sorry you experienced those thoughts too, but I’m glad olanzapine worked well for you. It seems to be a popular choice for pp. I’m under a nhs psychiatrist team now with bipolar 1 diagnosis, almost 4 years on from pp and still struggling with fluctuating moods. I’m gonna phone them in the morning and ask for urgent medical review. Partner and family very supportive xx

[x_Amy Volunteer in reply to Isabella5991]

Morning Isabella, I hope you had a restful night.

Thank you for your kind words. Asking for an urgent review is a great idea, I hope the phone call goes well today. Your partner and family sound wonderfully supportive and that’s lovely to hear 💗

Just on a personal note, I found keeping a mood diary helpful for a really long time, to pick up any patterns after recovering from PP. 6 years on, after noting really big shifts occurring each month, I was diagnosed with pre-menstrual dysphoric disorder (PMDD) - turns out my body and mind are ultra sensitive to hormone changes! At first it was daunting to receive another mental health diagnosis, but I found a lot of comfort in knowing more about myself, and I try my best to be extra gentle with myself when symptoms start to pick up 🥰

Take good care and I hope you don’t have to wait too long for your medical review.

Amy xx

[Isabella5991 in reply to x_Amy]

I also have PMDD and it’s a real struggle. A week each month I am a mess and my meds aren’t enough to control it. I’m sorry you have it too, but I’m not surprised because I think it’s probably fairly common amoung us who had pp. I also had a milder episode when I stopped breastfeeding. Also highly sensitive to hormone shifts. What did you find helped you With pmdd? I may consider the pill xx

[x_Amy Volunteer in reply to Isabella5991]

I’m sorry to hear that you struggle with PMDD too. I’m glad we are in a time where there’s a bit more awareness around the condition and, as with PP, we can share our experiences 💗

I had the mirena coil fitted a few years prior to my diagnosis, and I am sure that exasperated the condition. On the flip side, I’ve heard that the coil (and also the pill) can have wonderful benefits for other women’s symptoms, so it really can be a case of trial and error for a while.

For me, the SNRI venlafaxine has helped tremendously. Some months are still trickier than others but overall, my symptoms are much milder now. Also, things have improved further since I had the coil removed.

I hope you find something that works for you! xx

[Isabella5991 in reply to x_Amy]

Thank you for letting me know, I’m glad it makes your symptoms milder xx

What symptoms do you get on pmdd week? Mine is mixture of hypo depression psychosis symptoms ocd anxiety and tics. It changes each month but recently been a lot of hypo and depression. I am already on sertraline, but maybe your one is specifically good for pmdd.

I have been reccomended a female psychiatrist on here who specialises in issues like ours so I’m gonna try and get a referral xx

[x_Amy Volunteer in reply to Isabella5991]

No problem! I was prescribed sertraline on being discharged from the MBU. It was very good for me, but unfortunately ran its course after a couple of years even at a high dose. I switched to citalopram, the same applied there, but I’m happy to say I’ve been taking venlafaxine for 4 years and it’s still working really well for me.

I’m so sorry to hear how PMDD affects you. Please know that you’re not alone, I resonate with so much that you described! When my PMDD was at its worst (going to insert TW here, please take care reading 💗) I had very severe PTSD symptoms such as flashbacks, even in my dreams. I would feel really dissociative, and sometimes just so uncomfortable in my skin. Some weeks I was bed bound due to the dysphoria and I had paranoid thoughts. Fortunately, I could recognise that even though it was very distressing, that it didn’t mean I was relapsing but I did call the treatment team often for reassurance. They were wonderful, and helped me so much through those difficult days.

A referral to a specialist psychiatrist is a brilliant idea - that coupled with a medication review with your current team is a great action plan 🥰 it would be lovely to hear how you get on xx

[SammySeal]

Hi Isabella

Sorry to hear your feeling so low and not getting on well with your meds at the moment. Sending you a virtual hand-hold. I'm glad to hear you were going to get an urgent medical review. Make use of any support you've got. At my lowest, I found a call to a helpline got me out of many a pickle.

I've recently been prescribed Quetiapine and to start with I found it made me extremely tired and sleep excessively, but that has improved. Now I have been on it for 2 months the tiredness is not too bad, if I can only get myself up out of bed I'm ok. Some days though, especially if I've had a few 'good' days, I can't lift my head off the pillow. I am on a combination of meds though, so it might not all be the Quetiapine. I like the fact that it has made my psychosis symptoms disappear so will stay on it.

How long have you been on it for? Everyone is different with meds, so please do discuss this with your medical people, and come back and chat on here whenever you need to.

Sammy x

[Isabella5991 in reply to SammySeal]

Thank you xx

How tired is tired for you? I’ve been on it one week and sleep all night and most the day and mong out on the sofa for the rest of the day. It feels like poison. I’ve never been so unwell from a medication before. It’s honestly hell. Psychiatrist team useless and won’t phone me till Friday. Xx

[SammySeal in reply to Isabella5991]

Hi Isabella and you're really welcome. Oh yes, by a week in on the Quetiapine, I was like a hibernating hedgehog still, though I was in psych hospital so could pretty much sleep and rest as much as I liked. I'd get woken up to go and get food in the canteen but would barely wake up to eat, then straight back to bed. Even by a few weeks in though the tiredness improved and I could some days get up for breakfast and stay awake until after lunch. Now a couple months in it's probably 50/50 with the hibernating / ok days. So it might be worth you hanging in there to see if things improve? I find it so frustrating but I'm getting better slowly, so all the rest must be helping. But...everyone's so different on meds. Just replied to your other post - really hope you get to see a medical person soon. Thinking of you. Sammy x

[Isabella5991 in reply to SammySeal]

Bless you that sounds horrendous. Similar to me then. It’s such a strong sedative is r it xx

[SammySeal in reply to Isabella5991]

Thanks. Thing is the other two meds I’m on also cause drowsiness so I’m not sure which is the main culprit! I get to see the psychiatrist next in a couple of weeks so I’ll see what they say. Take it easy. X

[Survivedwithcolor]

I’m sure you know, as others have said, that medication reaction is so very unique to each person; I often say to people that I don’t think one really even needs an MD to become a psychiatrist. All you really need is a prescription pad and a list of medications, and then you just start giving them to people and see what works. That is literally what has been done for me over the last 20+ years. There seems to be no science, rhyme or reason to what works for what people and what side effects you will get. There are really only general guidelines. Like all of these meds made me gain weight. Every single one!

I did take Quietapine/Seroquel and it was the first antipsychotic that really worked for me as far as regulating my symptoms. I also gained 60 pounds on it and slept through years of my life. Like you, I could not stay awake. I just couldn’t. I was like a zombie. On top of that I lost every creative brain cell in my body. I had no ability or desire to write or draw or play my piano. My mood was reasonably good but I struggled just to live life with my two children and function normally. I’d get up at noon, go back to sleep from 2-5pm, to bed at 11pm and sleep until noon the next day. I think my husband was ready to divorce me.

I’d give any medication a couple weeks chance but if things don’t start to resolve, I’d go for another med if you’re allowed. Aripriprazole didn’t work for me because it gave me facial tics that the doctors feared could become permanent, so I had to go off that. The one I did best on was a newer generation drug called Latuda (lurasidone) and that’s a very popular drug here in the US if you have health insurance to pay for it. My creativity came back, my weight stabilized, and I really was able to draw myself back together and eventually get off it altogether. It’s unfortunately very expensive and I don’t know if it’s approved in the UK. It’s a shame the drug companies hold on for every dollar they can squeeze out and people who really need these treatments don’t get to benefit.

Hang in there and remember, this too shall pass. One day at a time. Try to find something positive you can hang onto - journaling, walking your dog, drawing, knitting, and let that draw you into a better place at least some of the time. Get out and talk to people and of course visit us here.

[Isabella5991]

Hello everyone, thanks me for replies. I’ve just got back from an and e. Mental health nurse was really nice but said 111 wasted my time referring me here cos they can’t prescribe antipsychotics at hospital. They tried calling my psychiatrist team but they were useless. The nurse was great and really assertive. She called crisis team and they will come to me tomorrow with a doctor and prescribe me new meds xx

[Rachel_at_APP Partner APP in reply to Isabella5991]

Thinking of you for your appointment. Take care. Rachel x