On (re)diagnosis in 2011 I was recommended quetiapine, but also asked to consider lamotrigene. I was given the chance to go away and read the leaflets and come back the following week, but I wanted to get started. Also my considerable experience of Patient Information Leaflets suggested that most drugs have crappy side effects and that as a patient it is almost impossible to tell which would drug would be crappiest for you as an individual. So I just went with the first line suggestion.
I hope that makes it clear than at no point have I ever felt that at my psychiatrist and I made a bad decision. Lamotrigine has turned out to be a really good drug for me, but there was no way of knowing that and choosing it over quetiapine at the time. As with so much mental health prescribing, it was pretty much a matter of guesswork.
Since then, if I am counting right, I have mentioned quetiapine in 44 blog posts, which probably says something about its impact on my life. In February this year while I was in hospital it was decided that I would come of quetiapine and change to aripiprazole, a decision I haven’t really much written about before.
Quetiapine is a new generation/atypical antipsychotic, often better known by its initial brand name Seroquel, although it went “generic” (the patent expired so any company could produce it) in 2012. This means that NHS pharmacies can shop around for the best price and will purchase whichever brand is most cost-effective. Brands I’ve taken include Accord, Atralak, Quettor and probably others that I have forgotten.
Aripipazole, best known as Ability, is another atypical antipsychotic but is not thought to cause many of the side effects which make other antipsychotics intolerable to some people.
The experiential bit
The most obvious and immediate side effect of quetiapine was sedation. I had hoped that quetiapine would be a quick fix, that if I took if for maybe a month or two my symptoms would subside and I could return to work. It didn’t take long for me to realise that the sedation was as disabling as the symptoms. Sleep had become my number one preoccupation and I felt I had little quality of life. Over time, I adjusted. I felt less sedated at 700mg that I had at 300mg but a level of sedation remained and I continued to sleep for about nine and a half hours every night.
About three hours after taking it, it was if a shutter came down. Tom could see it in my face. It didn’t matter what I was doing, reading, watching, I had to go to sleep. If we were out, we had to get home, quick. Once in bed I would fall instantly asleep. Getting up was always a struggle; in fact waking up at all was hard. My conscious mind would want to wake, but the drug would prevent it. It was like trying to swim to the surface, only to find my ankle was grasped by an octopus.
Early starts were really hard. People I have worked with have seen how out of it I looked at the start of a meeting or training session, how I only really became lively mid morning. Working two days in a row required taking the quetiapine at so early that I barely had time to eat dinner before heading off to bed again.
The other really, really difficult issue was weight gain. I was warned of the potential for this when it was first prescribed, but I just thought, “Oh, that won’t happen to me, because I’ll control my eating and work out more.” Except when you do nothing but lie on the sofa all day because you are so sedated, you really can’t exercise. Except quetiapine disrupts your appetite and the feedback loop that tells you when you are full, so you are always hungry and rarely feel satisfied. Except quetiapine disrupts your metabolism so that you gain and retain more fat that usual.
So over time I gained about 3st – which is nothing compared to many people I know, but has still seriously affected my body image and self-confidence. I tried to lose it, but strict dieting for a couple of months plus tons of exercise produced precisely no weight loss and I became discouraged. I also developed the characteristic pot belly that has lead to numerous embarrassing conversation about when my baby is due and whether I would like a seat on the tube. I found these really humiliating.
Quetiapine also slowed down my bowel function. Don’t worry, I won’t go into too much detail, but the problems became really quite serious despite daily doses of laxatives, and I had to be referred to a gastroenterologist.
Other, weirder, side effects included a stuffy nose soon after swallowing the pill, which caused me to snore, something I also found very embarrassing. And it caused me to have occasional engorged and leaky boobs, something it’s not “supposed” to do as it’s not one of the new generation antipsychotics which like, say, risperidone elevates the body’s level prolactin, the hormone responsible for the production of breastmilk.
Was it ever helpful? At times. The sleep bit was often useful – although when I was really high I would break through even 700mg. When I was having mild psychotic symptoms an increase really helped down the frightening experiences I was having.
But overall I had had enough. When I was given the chance to switch to another antipsychotic, I jumped at the chance, although initially I baulked at aripiprazole as I had heard bad reports of agitation and insomnia. Looking at the comparison chart of antipsychotics however it was clear that almost all the other options either caused weight gain that was actually worse than quetiapine, or elevated prolactin levels. So I decided to give it a go.
It was an unmitigated disaster. During my slow reduction of quetiapine (100mg/week) I’d been quite wobbly, and ended up under Home Treatment Team. But the last couple of weeks of the quetiapine, when the aripirazole was being added in, I was starting to feel OK. Then I dropped the last 100mg of quetiapine and a kind of aripiprazole hell broke loose. I was barely sleeping. I was so anxious and agitated I didn’t know what to do with myself. I am an anxious person who takes anti-anxiety meds, but on a scale of 1-10, this was about a 12. I have never known anything like it.
It didn’t take me long to be desperate, exhausted, suicidal. I ended back under Home Treatment, who encouraged me to go into hospital. I said I would stay in the community as long as I had an urgent medical review. I needed someone to tell me that either I should hang on in there because the beneficial effects would soon be kicking in or that I should stop the drug there and then. If I did have to carry on, then I would have to go into hospital, because I couldn’t cope at all in the community.
I saw Dr HTT who said that what I was experiencing was clearly iatrogenic (medically induced) and clearly intolerable, so I should just stop taking it. My God, I was relieved. I waited then to hear what his suggestion would be about the next antipsychotic to try but he suggested… nothing. No new drug. Just to see how I was on lithium, lamotrigine and pregabilin.
I was stunned.
What… no antipsychotic? At all?
I was so habituated to the idea of taking an antipsychotic every day that I didn’t know how to feel. The idea was scary, but it was also liberating. He knows me well, and knows that I have been frustrated at being on so many different drugs; he saw the moment as a chance to address that.
So here I am on no antipsychotics. How do I feel? Well, firstly, and most importantly, I would best describe my current state not in terms of up and down, but in terms of having clarity. I didn’t think the quetiapine was sedating me anymore but now I realise it must have been because to borrow a cliched analogy, it’s like putting on glasses for the first time.
My digestive function is better – no more laxatives. I am eating less, noticing when I am feeling full, feeling truly hungry. I haven’t really worked on losing weight but I’ve dropped a little anyway and I look a little less pregnant. I can breathe at night, so I don’t snore.
I had some really problematic insomnia going on for a while when the aripirazole was still in my system and the quetipaine wasn’t, but that’s settled. I’ve had to relearn how to just go to sleep though. Without the shutter coming down I’ve had to teach myself to drift gradually off, something that made me really anxious a couple of weeks ago but is feeling more natural each night.
I’ve still got lots of problems. I keep trying out work tasks and finding that I am either too delicate/emotional/anxious or that my brain simply won’t work (blogging is nowhere near the level of cognitive function required to write professionally). I told my therapist the other day that I feel like an egg – I may look smooth and strong and solid but actually I’m really, really fragile. But in terms of how I feel off antipsychotics compared to being on them, there is not contest.
I’m not knocking them. I know they help a lot of people. And I most certainly am not ruling out taking them again at some point in the future. But at the moment I am excited to be riding with no hands.