Seroquel and Me

Many of my beloved Bi-Polanders on my Facebook Page have had a chequered history with Quetiapine (usually sold under the brand name Seroquel). I thought it would be useful if I shared my own story with it so here goes:

Firstly, let me replace my taking Seroquel in context. After being taken off Mirtazapine (also known as Remeron, Avanza, Zispin) because I was mentally very well on it but had great physical problems (essentially it put my colon to sleep - not a good thing!), I was put on Carbamazepine which is a mood stabiliser (usually sold under the brand name Tegretol). My brain reacted to Tegretol immediately and very positively. Unfortunately, my body didn't follow suit and it refused to tolerate the sort of daily dosage (600mg to 800mg) I needed in order to be stabilised - i.e. function and sleep reasonably well. The climb up to 400mg daily was a highly unpleasant experience. I felt as if I had contracted a tropical disease and had to spend a week in bed feeling physically very ill. I went through this every time I increased my daily dose but eventually my body settled down and I felt well. Then I reached the stage when I needed to increase my dose to 600mg. My body went crazy!. I started passing blood in my urine and I was so poorly I nearly ended up in hospital. It appears 300mg/400mg daily is the maximum amount of Tegretol my body can happily tolerate. Unfortunately, that dose is a little 'light' to keep me stable and sleeping. Enter Seroquel.

At the end of July 2010 I was prescribed Seroquel as an adjunct to Tegretol. Seroquel is an anti-psychotic with a very useful property: it enhances the effect of mood stabilisers.

For the first three months I thought Seroquel was a miracle drug. I started taking 100mg daily with no side effects whatsoever and easily climbed up to my recommended daily dose of 300mg. I felt really well on my 600mg regime of 300mg Tegretol + 300mg Seroquel.

By the end of October 2010, I started feeling unwell again. It looked like my yearly 'crash' had hit me early. I found it difficult to move. I felt 'heavy'. I felt my medication was no longer working for me. Because my symptoms resembled depression so closely, I thought I should increase my daily dose of Seroquel. I knew I could not increase my daily dose of Tegretol. With my psychiatrist's approval I went up to 400mg and felt no better. I increased again to 500mg: no improvement. I still sat in my armchair for 6 hours at a time, unable to move very much. I could no longer take a shower, leave the house to go food shopping, etc, etc.  You know the drill. Even though something told me there was something different about it, I thought I was severely clinically depressed again and I was scared....

But then in early January 2011, my yearly crash occurred as it normally does and it enabled me to distinguish between the way my body reacts to clinical depression and the way I had been feeling hitherto. Clinical depression feels like an internal inertia due to a total lack of energy. The Seroquel 'drugginess', although leading to the same result, felt differently: it felt as if I was carrying a very heavy cloak that made moving around extremely difficult. Worse than that, the medication I was taking to help me sleep was stopping me from going to sleep! About an hour after taking the meds, my head felt drugged up to the eye balls (and yet NOT sleepy) but the rest of my body (my legs in particular) were experiencing the most awful restlessness - something I could only describe as a mixture of an unreachable itch and a burning/pulling sensation. I spent many an early night stamping my feet around my kitchen with my eyes closed, scratching my legs with a scrubbing brush!  Not only that but I also woke up every morning with the most painful burning headache. As well as reaching for pain killers the minute I opened my eyes, I used to walk around with a pack of frozen peas on my head just to calm down the burning sensation. 

As I was able to distinguish between the effect of clinical depression and the effect of the medication I was taking, I started to gradually reduce my daily dose of Seroquel, 50mg at a time. Although the first week on the new dosage was very unpleasant assailed as I was by nausea, I immediately felt 'lighter'. The clinical depression was still there but I could cope with it better. I also found the restlessness and the headaches disappeared for a few days until I reduced the daily dose again.

It is now March 2011 and my energy has naturally returned to a level I can live with. January and February are NOT my best months and I am glad they are over. My psychiatrist tells me that on a daily dose of 150mg/100mg of Seroquel, the unpleasant side effects should disappear. Apparently, the side effects I have described are well known when Seroquel is taken at higher doses.  My psychiatrist is loath to take me off Seroquel completely (unless things continue to be unbearable) because it might destabilise me. He did say however that I should go back and see him if I find I still struggle with a lower dose of Seroquel.

So my daily regime is now 150mg Seroquel + 300mg Tegretol at night with 40mg Citalopram (an anti-depressant also known as Celexa and Cipramil) in the morning.

Some of my beloved Bi-Polanders on Facebook have descried how they felt Seroquel 'had turned on them'.  That's pretty much how it has felt to me too. Let's see whether it will remain a friend at the new lower dosage .... :D

Meds

Hi Gabrielle,

I am a fairly recent newcomer to your Blog and to Bi-Polar having suffered for years with severe Depression and recently (June 2010) dx'd as BP2.  Don't you just WISH that the docs would get a better handle on the DRUGS that they give us - most of them don't have a clue what they are prescribing us and it is all just a guessing game anyway :(

Thank you Sam

You are so right! A lot of drug prescription is guess work. The trouble is that doctors only focus on the alleviation of symptoms - ie how the condition manifests itself on the surface. They are not equipped to treat tthe condition itself: how it became apparent, how it operates in a particular individual, how that individual responds to his/her condition both physically (something that is far too often ignored) and emotionally (something psychiatrists are usually hopeless at becauwe they see powerful emotions as the condition itself). Messing about with the brain's chemistry is a dark art and yet it can help us function again. I guess it's the luck of the draw....  :D xx

Yes to finding your blog via

Yes to finding your blog via facebook....thank you!!  Quetiapine is one of my drugs 600mg XL (slow release) and slow release or not within 4 hours of taking it Im a walking zombie....heavy legs, numb brain, foggy head etc  etc   and the mornings....I need about 9 hours sleep otherwise Im fu*ked and can not function at a reasonablle hour

GGgggrrrrr

Thanks again

Thank you Anonymous

I had to laugh at your zombie description! Oh boy do I know what that zombie is like ....  Slow release or not Seroquel gets me in that state within one hour of taking it. Doctors tell me that's not possible. I tell them it's not about what is possible, it's about what's true. It's not until I fell down the stairs and burnt  myself a couple of times that they started to hear what I was saying.  It's hell when my own psychiatrist is away and I have to see some other 'qualified' idiot!

Anyway, I am glad you have found me and I have found YOU!  :D xx

Response to Seroquel blog

Yes, Seroquel is a very mixed blessing and seems to take forever to get to a "stabilizing but not hellish" level that also works with your other meds. I had been on 800 mg for about 2 years and gained over 70 pounds, lost 50, then gained it all back. Didn't have the side effects you described at night - it puts me right out - but mornings are very tough and I ended up sleeping between 12-16 hours a day. As you noted, still had breakthrough depression, anxiety, etc. So, with Doc's help, am VERY slowly weaning myself off it and at the same time titrating up on lamictal. Am at 475mg of seroquel now and it'll probably take a year or 2 to get off completely. The reason I'm sharing so much is a word of warning for getting of seroquel - the withdrawal is absolutely horrible, especially if done quickly, say over a week. It takes even longer to get off this drug than to get on it! I have spoken to Astra Zeneca about this and they acknowledged that there is withdrawal with seroquel. So for those reading this and considering or in the process of getting off this drug, please have a long talk with your pdoc about how and how long you will do this process. There are a lot of positives for it but unfortunately the grogginess, restless leg syndrome, and excessive weight gain seem to be very common side effects. Lamictal is a much more weight neutral mood stabilizer and no sleep side effects - though you have to watch out for the "lamictal rash". Hope this was helpful and very sorry to hear you had such a negative reaction to seroquel, but it sounds like you've been able to find a "happy medium".

Thank you Kalima

THANK YOU FOR YOUR WELL WRITTEN WARNING ABOUT GETTING OFF SEROQUEL.  You are absolutely right.

I am slowly reducing my daily dose  by only 50mg/day over a one month period WITH MY DOCTOR'S SUPERVISION and even then it is extremely unpleasant.

Thank you again for taking the trouble to write this most important comment on my blog  :D xx

meds

Do you or any of you bi polanders have any expeareance of olanzapine meds, this is what i have been on for a number of yrs, it helps to stop the highs but doen't stop the lows, Do you think i should be taking any other meds to lift my moods?

Hello Dave

As you know I am not qualified to give you medical advice but I will share my experience with you. Being on mood stabilisers is not enough for me, I also need an anti-depressant. It could well be that you need to add an anti-depressant to the Olanzapine you take. As an atypical anti-psychotic, Olanzapine is very good at controlling the highs (as you mention yourself) for those for whom it works, but it is not particularly good at managing the lows.  I would encourage you to speak to your doctor about this as soon as you can. There is no point in suffering any ore than you absolutely have to!  :D

quetiapine

Hi guys thanks for this page. I started taking 100mg quetiapine last week. I already take 40mlk citelopram which I highly reccomend as an anti depressant I stabilised at 40ml 2 years ago. I take 5ml valium and 80 ml if propranolol. I've been having mood swings lately..being overly emotional and waking up either every hour or at 4am..feeling low. When I took the tablet I was so tired and had the best night sleep. Then came the rage..I was like a bull in a chins shop..I was verbally abusive even violent serfice to say I drop these meds after 4 long days of being totally psyched up. I have moved into zopiclone and I'd I'd working a treat so far girls sleep my moods have lifted bug I'm still not right. I'm seeing my pdoc soon and I'm going to tel bimonthly what has happened and ask about zopiclone. I have bit polar bpd. I'm aware of it and have accepted it so now I do everything I can to lead a normal life well kind of lol. I smoke lucky to have understanding good people around me. I have been like this since a going age and I've leart to stay away from people and situations that make me anxious,scared, angry, emotional and violent. Hope this helps..when I have a bad day I accept it n my mad side comes out n when I have a good dat I enjoy it n forget the bad take the happiness dnt be addicted to that pain because happiness brings acceptance n that is such a big tool for us. Xxx

You sound like you are

You sound like you are experiencing a lot of fluctuation - please keep a close eye on your wellbeing and take good care of yourself. xxx

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It is normal to become detailed to very projects. - Marla Ahlgrimm

Seroquel - Just another drug

I have had similar experience with Seroquel and it seems that our body gets resisted to its effects very quickly. It is like we have to find papers at www.topamericanwriters.com without knowing what is present in the papers. But, the initial burst of health and mental calmness provided by Seroquel is unbeatable. So, trying it out is not a bad option; but, one has to approach the doctor for change of prescription after a few months.

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