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Psychosis

Physical well-being and side effects of medication

Many people spoke about the physical impact of taking a variety of different types of medication, primarily antipsychotic medication (for more information see ‘Medication). People also spoke about their physical health more generally, including strategies that people used to improve their physical well-being (such as diet and exercise). A few people talked about the difficulties of getting their physical health cared for when they were in the care of the mental health system.
 
People’s sensitivity to psychiatric drugs varied enormously, with some people experiencing severe side effects. The side effects people spoke to us about were: weight gain; muscle stiffness; heart problems; digestive problems; type II diabetes; confusion and memory loss; sleepiness; movement problems such as muscle spasms; emotional blunting, feeling over-sedated and like a ‘zombie’.

Older antipsychotic medications are more commonly associated with side effects such as sedation and neuromuscular problems ( e.g. restlessness and tremor). Whereas newer so-called ‘atypical’ medication produces fewer of these side effects but is associated with metabolic syndromes such as weight gain, hormonal changes and type II diabetes amongst other side effects. However there were some people who said they didn’t experience any of these effects on their current medication and talked about their medication as a ‘life saver’.
 
Gains and losses of taking medication
Most people experienced at least some of the physical side effects listed above and, together with their psychiatrist, weighed up the benefits of taking medication along with the side effects they experienced. Some people felt they were unable to choose whether or not to take a particular medication when they were detained under a section of the Mental Health Act.
 

Dolly found quietiapine helped her, but can’t think of one part of her body that hasn’t been...

Dolly found quietiapine helped her, but can’t think of one part of her body that hasn’t been...

Age at interview: 39
Sex: Female
Age at diagnosis: 22
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It was actually medication called quietiapine that the voices started to just die down a little bit, and my paranoid thinking, kind of lessened as well. It didn’t go away a hundred per cent, but it actually, it had like an obviously effect for the better, taking that medication, yes.

And what’s been your experience of side effects other than this sort of sleepiness?

Well I’ve kind of, a lot of I mean I can’t think of one part of my body that hasn’t really been affected by a side, you know, side effect. For example, blurred vision. You can, you know, I love reading and writing. If I can’t do that, why, you know. Just having you know, what. I remember there was one medication that used to make me drool. That’s why I think it’s really interesting people think. They associate certain physical character, characteristics, like the shuffling and the drooling as signs of madness and it isn’t, it’s signs of medication. And you know, I just remember just drooling all the time, and they say, “Oh its just a little thing.” You know, the doctors are saying. You know, just ignore it. I said, “How can I ignore it, every time I speak to people they are looking at my dribble.” You know. I mean, I... there was one medication that I took that, you know, was doing things to my liver, my doctor was telling me. So they took me off of it.

Can you remember what that was?

I…There was something, is it, I don’t know if it’s they’re called electrolytes or something in my liver, was you know, really, really quite high. And I had problems with kidney, kidney functioning at one point. And I now am having, well the last couple of years I had seizures but the doctors don’t know whether that’s to do with the medication I taken, I’ve taken or if it’s, you know, another, another kind of cause. But it’s funny that my, I’ve got two sets of friends. I’ve got the friends that are in the system, and the friends who are not, around my age. And most of my friends in the system have got physical health issues, like diabetes, you know, and they usually are much larger people then my friends who are not. And I’m sure, you know, I know I actually know certain medications make you more prone to having diabetes. And they’ve got shorter life spans as well. Which is, well, they some people say like it’s the mental illness, but, you know, you can all sort of argue it’s also the medication. No it’s a very kind of difficult subject area. Because I can see how it helps so many people, medication. But I also can see it, it might not be the thing for other people, and it might be doing them more damage actually.
 
 

Jenni hasn’t experienced any side effects from the antipsychotic, mood stabiliser and...

Jenni hasn’t experienced any side effects from the antipsychotic, mood stabiliser and...

Age at interview: 30
Sex: Female
Age at diagnosis: 26
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I changed drugs after I went to visit my birth family. I changed drug, and the new drug was better for me.

What was the new drug?

Citalopram or something like that. Now I’m on three medications. I’m on a antipsychotic an antidepressant, and a mood stabiliser, and together they work. They make me feel better. I never, I thought, oh God people think oh God what a burden, like having to take three medicines a day. That means you’re not better. But it means that I am better, do you know what I mean? Yes.

So you’ve had quite a good experience?

Yes. Yes. The only thing is before I went to hospital, and then while I was at hospital, I put on a lot of weight, and they say that the drugs, make you, make it harder for you to lose weight, because they increase your appetite and they slow down your metabolism. So people blame it on the drug, but really it’s the condition, and I think that it’s better to take your medicine and feel well, and try and lose the weight really, yeah.

And have you experienced any side effects at all?

No. Apparently, there’s lots, but I’ve never had side effects. I’ve been so lucky.

So no drowsiness or anything like that?

No. I mean, the only drowsiness I had was the illness. Yeah.

I’m on three drugs. One’s called Lamotrigine One’s called Citalopram and ones called Abilify. It’s called Abilify, yes.

And do you talk to the doctor about dosage and stuff like that?

Yeah I was very quick at picking it up see, you just get the medicine once a month, and you take one of each a day. And you can take it whenever you like. Because I don’t have side effects, it doesn’t matter what I take it. But say if it makes you drowsy, you’re meant to take it at night time, so then you can go to sleep. But I really didn’t experience anything from them. So I didn’t have to worry about that.
 
Two of the most common side effects that people experienced were weight gain and sedation. Weight gain is particularly associated with the use of newer antipsychotics known as atypical antipsychotics. A few people we spoke to experienced sudden and dramatic side effects, or allergic reactions, that felt unfamiliar and frightening.
 

Kirsty’s tongue swelled up as a result of taking medication and it was difficult for her to breathe.

Kirsty’s tongue swelled up as a result of taking medication and it was difficult for her to breathe.

Age at interview: 40
Sex: Female
Age at diagnosis: 24
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At one time when I turned up there I was given I haven’t got it quite clear in my head but I think I was given Haloperidol and my tongue swelled up, and it wasn’t until one of my neighbours who had been having a cup of tea with me when the crisis team came out. He’d gone home, I think he followed the car to the unit, and then he’d come home to get me some bits and bobs and that because I was still in my slippers and stuff, and when I came back I couldn’t talk properly. It wasn’t till I was talking to him that they realised that I needed like an antidote to take my tongue back down, sort of thing like, you know. Otherwise it was going to throttle me and that. But yes, they didn’t always say, oh you know expect this or expect that.
 
 

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Pete was on very high doses of medication in hospital and experienced severe side effects.

Pete was on very high doses of medication in hospital and experienced severe side effects.

Age at interview: 48
Sex: Male
Age at diagnosis: 30
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And I know you talked a little bit about it before but what’s been your personal experience of medication?

Very, very negative, it never ever took the voices away dictation now. I believe the stomach problems are linked to long term use of antipsychotics probably never, they’d never admit to that. but as I say I was naïve, when I went into the system I didn’t know anything about psychiatry or Mental Health, I saw the psychiatrist as being the expert, “Take these they will cure you.”

They didn’t. “You just need to take a bit more and they will cure you.” And it went on and on and on to the point I was on, as far as I can remember at times two thousand four hundred milligrams of Sulpiride forty-five milligrams of Stelazine, I was on Fluoxetine, Mesoridazine, Lofepramine, Chlorpromazine all at the same time to the point I just, been I actually, to the one point I actually got weekend leave from the hospital and I managed to walk to the bus stop and I sat there for three hours, I just couldn’t get off the wall until, a nurse going off shift said to me, “Why are you sat here?.” I said, “I just can’t get off the bus.” And I had to be taken back to the ward because I didn’t get a, I wasn’t given anything, muscle relaxants or anything it was absolutely horrendous but the voices I thought were getting worse.
 

Peter and Andre both reported problems with sex as a side-effect of their medication, which is not unusual. This can often be solved by changing to a different type of medication.
 
Finding a medication that works
Over time many people took different types of medication, and some were able to find a medication with fewer side effects that still improved their mental well-being.
 

Andrew has been taking olanzapine for the last ten years and doesn’t experience any of the...

Andrew has been taking olanzapine for the last ten years and doesn’t experience any of the...

Age at interview: 59
Sex: Male
Age at diagnosis: 24
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But for me I was glad the asylums were closed down, and I’ve not been an inpatient since the asylums were closed down. And the last time I was an inpatient was in 1991 at [name of asylum] near [place] and I managed to negotiate with the medical staff there that I wouldn’t have medication by injection. I negotiated that I would have medication by tablet. I have been taking my tablets every day since 1991. In recent years, about the last ten years, I’ve been on atypical medication. The one I have been on is something called Olanzapine. It’s got even less sedative effects than the Largactil and Stelazine I was last discharged on. As far as I know, because I don’t have a lot of insight into my mental illness I haven’t been acting in a psychotic or paranoid way. I feel quite happy and content and I don’t have any unhelpful feelings that say, ‘the Russians are coming’ or that the ‘IRA are lurking around Kentish lanes, trying to do something against the Archbishop of Canterbury.’ I don’t feel there’s signalling going on, signalling go on to spy satellites or by Morse code or anything like that. I used to have those thoughts and they’re very unhelpful. I don’t have any of those thoughts today and I have had those kind of thoughts for nearly fifteen or twenty years. That’s due to the therapeutic effect of the tablets which I will accept. And as I say for the last ten years or so, I’ve been atypical medication and the one I’ve been prescribed is Olanzapine. And I’ve got no objections to taking it. Each day is the same. You know, I mean I don’t have restlessness or extreme sedation.
 
 

Tom has been taking many medications over the years and has experienced physical and...

Tom has been taking many medications over the years and has experienced physical and...

Age at interview: 39
Sex: Male
Age at diagnosis: 21
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And for the first few years, after my diagnosis, I went from medication to medication to changing, always changing round and I had some really bad ones.

]Some but this and it was some while before I was what I can, good medication, which is which is what I’m on, which is what I’m on now because I think it hadn’t come out at the time that I was ill. It hadn’t, you know, they just it had only come out a year or so after I was ill so I as soon, which can and does happen, you know, they. And it’s a much, which it was a much better one and it it’s the one I’m taking now. Which is called sulpiride, which, which is fine, you know, which is which I’m quite happy with, you know, but I did have to go, I had to try a few of the old the old fashioned ones. Before then which had a lot of quite horrendous side effects for me, you know, in particular.

And what are the side effects?

Well, one with this medicine called depixol. I was very tired all the time, very drowsy, very zonked out, you know, very medicated sedated. And also strangely enough, my throat constricted. The muscles in my throat constricted so it made it very difficult to speak. So I could hardly speak. It was and I tried to speak and it sounded awful, you know, it just like it sounded like someone was strangling me and I was trying to talk at the same time. So that that made me very wary of company and so I spent I spent a lot of those, I was on it for a couple of years, spent a lot of that time, [sniffs] you know, not, previously to my illness I’d been, you know, quite sociable and going out a lot and that kind of thing but that all went by went out the window. And also there was that and also, I’m not sure if this was my illness itself or a combination of the illness and the medication, or what, but what they call what the psychologists call affect. So I couldn’t laugh, smile I had to, you know, I’d previously been quite a humorous person but I’d lost all of that. Which also made me wary of going into company, you know. Because I was I was also a bit scared of as soon as I’d start talking to someone they’d realise I was I was mentally ill. Also there was all there was all of that, which was which was really difficult but things improved eventually with the new medication that that had just come out in about, I think it was ‘93 or ‘94. Which I which I went on. Things did get better but that problem with my speech which, you know, which I had no help from the psychiatrist didn’t refuse to believe it was a recognisable.

But things generally improved, yeah, with trying new medicine and that and that and that’s always the hope for people who have schizophrenia. That’s all, you know, that if they if they think there’s no hope there is because, you know, science and medical science is, hopefully, although I know it’s not funded as well as it should be. Mental health and but, you know, medicine I do, you know, I’ve had direct experience of medicines getting better over the years. And these things can happen, you know, and I’m holding out hope for there being an even better one coming out soon.
 
Others found they needed to take other medication beside their antipsychotic medication to counter side effects.
 

Janey found it took a long time to find the right combination of medication, as she felt awful on...

Janey found it took a long time to find the right combination of medication, as she felt awful on...

Age at interview: 52
Sex: Female
Age at diagnosis: 29
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I hated depot injections, really hated that, I think that, the, the six months that I was on Haloperidol depot was the worst six months of my life by a long time.

What was happening?

Oh gosh, terrible medication for me if I was up walking around I wanted to be lying down, if I was lying down I wanted to be up walking around so I couldn’t actually get my body comfortable, ever. I was kind of working for eight hours a day and then I would try and lie down sleep for the other sixteen because if I was asleep then the uncomfortableness of my body I wasn’t conscious of it. so even at work every time I sat down to write up my lab book I would get up and start doing something and it took me ages to work out this is just medication this is just restlessness, it’s not that you need to do something and so, I, my lab book didn’t get written up quite as well oh gosh it was so awful and I just wasn’t interested in anything. [Oof] and at the time because I suppose I seemed okay, well at least not psychiatrically ill, I couldn’t get the doctor to understand how awful it felt and in the end, and I said, I said, “Okay I’m not taking it then.” And he said, “Well if you do that I’m going to tell work that you’re not co-operating with the treatment.” So I stuck it for six months and then said, “I don’t care what you tell them and I don’t care if I get sacked I’m just not taking it anymore.” But it took doing that to actually get anyone to do anything about it.

And then what did they do when they did something about it?

So then I actually [sighs], I got ill I think and got sectioned, if I remember rightly, even though I was on the Depot and then he tried me on a new medication which was still on clinical trial at the time and I really liked it but since then it’s been withdrawn.

What was it?

Remoxipride. I really liked it as a medication a lot, but then that got withdrawn and then I tried a couple more and then in the end I went back to one of the old ones which is kind of alright I can kind of cope on it.

So what are you on at the moment?

Sulpride which is one of the older ones and Sertraline which is an anti-depressant and then I take Procyclidine if I’m going to have to sit down still for any length of time because otherwise, otherwise my legs still walk around on their own. So, you know, if I’ve got to sit through a film or, I sing in a choir, sit, sit down and, not fidget em] then I’ll take one otherwise I won’t, otherwise I don’t bother.
 
Looking after your physical health
Many people had tried, or had thought about trying, to live healthier lives, in order to combat weight gain often caused by the medication. Many also wanted to increase their overall well-being by eating well and doing exercise. Although it was often hard to do on a tight budget, some people spoke about joining gyms; some did exercise ‘on prescription’ and made changes to their diet.
 

Cat joined a gym as people had advised her to lose weight and she had 'a lot of time on her hands'.

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Cat joined a gym as people had advised her to lose weight and she had 'a lot of time on her hands'.

Age at interview: 45
Sex: Female
Age at diagnosis: 29
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You were saying before that you were going to the gym a bit and so on. Is that something you’ve done for a while now or …?

I started in December. I haven’t been to the gym for about three weeks, because it’s been so hot. It made me feel faint in the sun and like direct sunlight. And then I went on holiday for ten days. So now, once this week has finished I go on Monday next week. I’ll go then. And then continue. I was going five times in a week.

But it’s just, yes, I just procrastinate and I just think there’s something else I have to do, you know. Do one thing and then do something else.

And why did you start going to the gym?

Because I’m about fifteen stone and people were asking me when I was going to lose weight. I had a lot of time on my hands, and that seemed like a good idea really.

And have you enjoyed it or …?

Some of it’s a chore really, you know. But I like some of the machines more than others, so …

What types of exercise suit you best?

Well there’s a machine where you just lie back and you just raise your leg up like that and I find that really good. And I can close my eyes while I’m doing it. I find that quite relaxing to do. I do that twice. And then there’s a treadmill and then there’s cycling and you know, knees and your legs and various leg raises, stomach crunches. Yes.

And have you noticed any difference with your mental health after you started going to the gym or …?

Yes, sometimes I feel better, you know. Yes.
 
 

Rachel tries to get out for walks and has joined a gym with her partner to exercise during the...

Rachel tries to get out for walks and has joined a gym with her partner to exercise during the...

Age at interview: 47
Sex: Female
Age at diagnosis: 27
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I eat once a day. I’m vegetarian. It doesn’t bother me. It’s something I do. I eat to live. Not live to eat. [sniffs] I go to the gym, and I think I walk a lot, you know, when, not obsessively, but obviously when the weather is reasonable, I get out in it. I get out in it. Through the winter both my partner and I go to the gym on a regular basis, and being as physically fit as you feel able to be, is really, really helpful. And in particular, and I never used to be able to run. But I’ve started over the last eight months to run on the treadmill. It’s brilliant for anxiety. Absolutely brilliant for anxiety. And we did that actually but through, it’s at the leisure centre, the local leisure centre, and we did it through an initiative that was put out to GP’s, which was to particularly emphasise physical health to people with mental health problems. [sniffs] And it was to, I think it was a free assessment that you have, because obviously before you go to a gym you have to know how to use the equipment. And obviously you are weighed and all the rest of it. And a lady just came, because you had to take your jumper off or whatever. She said, “Oh where did you get that scar.” Because I’ve got a scar from the sternum to belly where I took a knife to my liver. And I told her and I said, “I was very unwell.” She said, “Well, you’d have to be wouldn’t you dear.” You know, [laughs] and, but she thought initially it was a heart operation and she did a lot of work with cardiac patients. So I think as well, you know, the thing to realise is that a lot of professionals are a lot more up on mental ill health. It’s not the, stigmatising scar, that you think it is. You know, there’s a lot more understanding out there now. And it just takes a bit of courage to actually go along and do things like that.
 
A few people were resigned to the fact that their physical well-being was not going to be a priority for them. A couple of people talked about the continuing pain from past suicide attempts.
 

Tim has had problems with high cholesterol and doesn’t do any exercise.

Tim has had problems with high cholesterol and doesn’t do any exercise.

Age at interview: 61
Sex: Male
Age at diagnosis: 19
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And how has your physical health been over the years?

Well I have high cholesterol, that’s why I take a pill for that. The last time I took any exercise was 1965. So I’m not exactly physic…. I don’t go to the gym or anything like that. But I’m fine. I, I chain smoke and take my heart pill every night and depixol every week. I’ve got some residual pain from one of my many overdoses and attempts to commit suicide in the past, but that’s not important.
Some people found that doing ‘mindfulness’ classes, yoga or meditation helped their physical and mental well-being. Margaret said that she had devoted the last three years to improving her mental health, and now wanted to join an exercise class as she had ‘neglected’ her body. For more information see the ‘Recovery’ section.

Last reviewed July 2017.
Last updated April 2014.
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