Mental health: ethnic minority experiences
Prescribed medication for mental health problems and their side effects
Mental health problems are often treated with medication. Different medications address different symptoms: antipsychotics for psychosis, antidepressants for depression, mood stabilisers for changes in mood and benzodiazepines for anxiety. Other classes of drugs, such as anti-epileptics, can also be used to treat bipolar depression, and yet others used for nerve root pain have been found to be useful in Generalised Anxiety Disorder. Doctors should review medication at least annually, but preferably more frequently.
Mixed feelings about taking medication
Many people had mixed feelings about medication, even though many recognised they needed it and found it helped them live more "normal" lives. Reasons for being unsure included the feeling that if they took medication it would be like admitting that they were unwell. Feeling sad about taking medication long-term and the physical and psychological side effects also caused concern. Many said, however, that medication had really helped and took it because it helped to relieve their symptoms. Some said it helped to keep their mood 'even', 'in the middle' or 'not happy, not sad', and others said medication had helped prevent breakdowns or self-harm. Getting medication from their doctor reassured some people that their symptoms were being taken seriously.
David says medication is the only thing that worked for him and it has been a lifesaver.
David says medication is the only thing that worked for him and it has been a lifesaver.
And have you got the, the dose right for your medication now or do you have side effects and that sort of thing?
At first when I was put on one fluoxetine a day I had. I had severe headaches and I felt nauseous for a day. But I decided to stick with it because I thought that's a small price to pay. And then, as the weeks went on I started to feel a lot calmer and lot more relaxed. As I've reported back to my psychiatrist and told him how I'm feeling and I'm behaving with, they've come up with this, this regime of tablets and medication that seems to work OK. It's been a very good approach because it's, it's been gradual. Give him a little bit of medication and see how that works. If he's stable that's fine, if not just keep on increasing the dosage and maybe reduce the dosage of something else. So it's been a bit of a trial and error but I don't think I've been a guinea pig or anything like that.
Ali says his antidepressant is the best medicine in the world and although it gives him some side...
Ali says his antidepressant is the best medicine in the world and although it gives him some side...
It gives me a limit of going down. It's like a threshold. I wouldn't go down below that. I wouldn't feel worse than this. It's' Yeah, simply yes, it does help me. But it kills my, I don't know. I'm a very expressionful person, but it sort of kills everything. It's, it makes you a bit more bland. But yes, it does help me, in terms of bad mood swings. Yes.
Levels you out?
Yeah, yeah. I think that's what I wanted to say.
Does... Because you seem to suggest as well that it, it stops you from dipping down
Yeah
but it doesn't necessarily bring you up?
No
Is that right?
Yes. Yes. That's exactly what I wanted to say. Yeah, yeah, it definitely doesn't bring you up. It doesn't make you happy. No. But it doesn't, it doesn't let you become sad. That's I think what it's doing.
She's ambivalent about taking an antipsychotic; although she realises she needs it she feels she...
She's ambivalent about taking an antipsychotic; although she realises she needs it she feels she...
When I get very tired on the medication, I get very tired you know, I mean you know, after I get very tired, I don't sleep well as well either, I suffer from insomnia, I have done for the whole of the fifteen years that I've been taking this medication which means that you know, I'm, quite often don't, you know, don't sleep well you know, and I'm always tired. as I think I've mentioned before I, sometimes I shake, I can't sit still I, you know, at night time I have dribbled, you know, just saliva, just you wake up and the pillow is wet and all that kind of thing if you are sleeping. You know, you get terrible side effects and the doctors don't like to, I mean I have to say this they don't like to hear, the doctors and professionals in mental health they don't like to hear you know, that the medication is, you know, there's anything you know, sort of detrimental about the medication. When not only does it give you terrible side effects but I mean seven out of ten I mean because I wanted to change my medication a while ago and I said to my doctor, 'I'd like to change my medication,' and he's very good, you know, he's not too bad for you know, a white middle class man you know, attending a Caribbean woman, well you know, second generation Caribbean you know, he can be understanding but he just you know, , you know, so you know, I give him credit where credit is due. But , so he brought in a load of information about other medications and I just surprised to hear that seven out of ten of them cause, you know, affect the heart, cause murmurs in the heart and all other kind of things and three of them actually cause you know, stroke or heart attack or something like that. And you know, they're giving you this and you know, it just, I mean you know, they're just, I mean you know, they're just, I know they're just sort of handing out death to really and I mean. And there are I think, I think people with mental health problems apart from suicide live something like that 10 to 11% shorter lives than the average person in the population. So you know, it's just, it's, it's you know, and you've got to take this knowing that it's possibly doing some good to you, giving you some kind of normalisation to your head but it's destroying your body and you know, how long are you going to live on it? And you have to take it for you know, the rest of your life, that's what people are saying. So you know, I mean you've got all this to cope with and first these crazy episodes when you're doing mad things, it's a very depressing world.
Some thought mental illness was caused by a chemical imbalance and believed that medication restored this balance, but not everyone agreed (this view is not supported by scientific evidence). Medication also helped people to sleep - particularly important for those who worked - and to feel calmer or generally feel better. A few people said medication helped them recover, though most expected to continue taking medication long-term to manage their condition rather than expecting to be symptom free (see 'Recovery'). One woman who found medication helpful wondered whether it was just a placebo effect. Overall, people judged that their medication was right for them when it controlled their symptoms and they could get on with their lives.
Some people found that medication didn't help their symptoms (or didn't help enough).
Some people with psychosis said that medication only reduced but did not stop, their voices or intrusive thoughts. One man, however, said his latest medication (aripiprazole) completely rid him of psychotic symptoms. A few people felt worse when they started taking medication and others mentioned that medication took time to work - although some felt the effects immediately. One man thought he should have had something else to help his depression in the four week period he waited for his medication to work. He said he felt like taking alcohol or drugs to help him cope, and on one occasion attempted suicide because the medication wasn't working. For others, the effect of medication was temporary, or on and off.
Side effects
Most people we talked to experienced side effects and these caused concern (find out more about antidepressant side effects). Common side effects of various kinds of medication included drowsiness, poor concentration and memory, feeling flat or emotionless, and weight gain. Many people also experienced physical side effects such as dribbling, dry mouth, headache, dizziness or the shakes. People also described losing control of their legs: one man described shuffling around and having to walk on his hands and knees. He thought he had been given a bigger dose of the medication because he's Black, but says he wanted to get better so he listened to the doctors.
Devon says he was given bigger dose because he is Black, and couldn't walk properly as a result,...
Devon says he was given bigger dose because he is Black, and couldn't walk properly as a result,...
So I listened to what the doctor was saying to me. I never disregarded. They used to say to me, 'We are going to give you this medication.' Some of the guys would say, they would fight them. 'No way.' I said, 'Give it to me. Even though it was making me bad.' Because I knew that was the right thing to do. I said to myself, 'These are doctors and nurses. They're not trying to harm me.' Because when you are paranoid you think people are trying to hurt you or harm you. It did seem that way to me at some point, that they were trying to hurt me, or trying to harm me. But something in the back of my head said,
'They have been trained. They wouldn't want to harm you. They've been trained. If they have been trained as doctors and nurses why would they harm me?' But other folks because of their paranoid mentality, it seems that they are trying to have a go at them and that is why I responded to the treatment I was getting.
Other people described more unusual side effects.
Ataur's antidepressant made his head burn and itch and caused pain in his joints.
Ataur's antidepressant made his head burn and itch and caused pain in his joints.
Oh you think it's side effects?
Side effect [nods] but you have to, you can't take another tablet to, not to have a side effect, then you're taking too many tablets so therefore I try and, well my GP is a very friendly person, my doctor, he advise me try to take as less as possible the sleeping tablet and depression tablet. Well if you have to you can't help it, you take it. And I think it's same thing because all this year I'm taking a drug, well tablet is a drug, I mean I take pain killer, I take sleeping tablet, I take depression tablet I take cholesterol tablet, I have to take aspirin for the circulation [circles arm] of blood, this is a lot of tablets, you know.
You're not very keen on taking so many tablets?
Well now I'm old man I have to take it because, I have to it take it because without tablets I can't do.
So you've resigned yourself to having to take them?
Yes from 60, you see when I have a problem, a depression in 1967 I take it, then I get better but I keep on taking, taking, taking and then I give up a few years. And some of the problems come as I told you before, you know, so, [pause] you see I don't want to take a tablet for nothing but when I have to do it then I have no other choice. Instead of getting worse in my health, my mind and my , for running business, or running life it is better to have a tablet to take a, have a stable and not too aggressive way to talk and things like that.
Raj's prescribed medication made him dribble, gave him bad breath, blood in the toilet, and unusual smelling urine. (Audio in Punjabi, text in English).
Raj's prescribed medication made him dribble, gave him bad breath, blood in the toilet, and unusual smelling urine. (Audio in Punjabi, text in English).
Do you take any medicine for depression?
No, for depression the doctor's medicines were giving me side effects so I read a herbal medicine in some magazine that you can take from Holland and Barrett's.
Ginseng?
Not Ginseng, St John's wort. [section removed] German doctor has done a survey in Germany and they work well, [section removed] when I went to psychiatrist there was that magazine. When I tried those pills, they suited me and then I told the doctor that I have tried this medicine after reading in the magazine. It works well and it has no side effect then the doctor told me to buy it and take these.
What was the side effect of doctor's medicine?
With that medicine water was coming from your mouth and your mouth smells when you are eating bread or you were feeling giddy or blood in the toilet or a smell from your urine. These were the side effects but the Holland and Barratt medicines suited me to the extent that I bought and take them myself.
Side effects can be serious: people experiencing drowsiness described being in danger when operating machinery at work, falling asleep on a bus late at night, being late for work and not being able to care for children. Other side effects caused people a great deal of distress.
The drowsiness caused by too high a dose of her medication led her to fall asleep on a bus late...
The drowsiness caused by too high a dose of her medication led her to fall asleep on a bus late...
Consequently, some had tried many different kinds of medication and had only recently found one that helped. Others found ways to manage the side effects caused by the medication, such as napping to deal with drowsiness or taking medication at bedtime. One university student took his medication late at night after studying so he could concentrate and remember what he had learnt. A few people took an anticholinergic to relieve the shakes. Many people felt it was worth continuing their medication despite the side effects: one man thought they were “a small price to pay.”
People also worried about the risks to the heart, brain, and liver and of becoming addicted. A few people worried about forgetting to take their medication or taking too much, and some were helped by their carer.
Ugo found it difficult to remember to take her medication and uses a blister pack to help her...
Ugo found it difficult to remember to take her medication and uses a blister pack to help her...
Right
But it doesn't last for long.
OK so can you tell me a bit about the medication that you take?
Yes I'm on an antidepressant called venlafaxine and I'm on diazepam and I'm chlorpromazine which I take three times a day.
And how do you feel about taking your medication?
Well if I don't take it I know I'll become so unwell and that I'll cut and I'll want to hurt my baby so I make sure I take it every day.
OK and do you have to follow certain instructions for taking the medication?
Yes
What?
They're in, they're in blister packs because if I don't have them in the blister packs I wouldn't remember to take them because I wouldn't remember if I'd took them. So the chemist has done them in blister packs for me.
Control over taking medication
A few people said they did not understand what their medication was or how it worked, and some said there was not enough information or evidence about alternative medication that might suit them better. When medication was not working, people sometimes went to their doctor to change their medication or the dose - but doctors didn't always agree with them. One woman felt confused and concerned about the changes to her medication because her doctor gave her no opportunity to discuss them. Another woman had tried numerous medications, and compared one doctor (who was unsympathetic about her side effects) with another who said she could take more of her antipsychotic if she felt like she needed it. While some people trusted their doctor to make decisions for them about medication, others preferred being given more control over what they took and when.
Dolly says doctors do not understand side effects, but is pleased her current doctor supports her...
Dolly says doctors do not understand side effects, but is pleased her current doctor supports her...
Yes
What was it that wasn't right? How come you got through so many do you think?
Well either they didn't work at all or they were extremely sedating, you know, I think, I can't remember which medication it was, but I would sleep like twenty hours a day. Well the doctor said to me, 'Well at least your symptoms have gone.' 'Yes,' I said, 'But I'm not alive really. I'm just sleeping twenty hours a day.' And he said, 'At least your symptoms are gone.' I said, 'You don't get it, don't get it that every person should have a life, you know.' Or it, it gave me kind of really bad physical side effects. So that's why I have gone through so many. And some of that have worked but only for like a year or two, and they have stopped working, so, that's how I've gone through so many. Also I have been, like, you know, been in the system quite a long time as well.
And this one that you're taking now, do you know the name?
It's quetiapine. It's an atypical antipsychotic. It also has the name Seroquel. I mean that has been the most helpful. I am also on an antidepressant called citalopram and I take other medication but that is for physical ailments. That has been the kind of right balance and that has kind of helped me I would say, this last year or so.
So that controls the symptoms that you normally experience or?
It really helps with paranoia. I'm not as paranoid as I was. The voices are there, but they feel like they're in the other room, rather than right next to me. I mean it just feels like the distance between me and voices has been widened. So that's how the anti psychotic drugs have helped, in that way. The antidepressant, well I don't know if it, it works. I do suffer from Seasonal Affective Disorder, so during the summer I'm OK, but you know, in the winter I do get very low and I don't feel like the antidepressants are working then. So I think, you know, on the whole, it's a good balance.
And do you get, I mean do you get any side effects or anything from those?
I sometimes get a dry mouth' that's it. I mean they are quite good for side effects as well, you know.
And you've got the dose right?
Well I've been kind of told by my doctor if I feel like I need a bit more, I can give myself a bit more. Not many doctors will say that to their patients [Laughing]. So I have, when I feel like I have gone slightly a bit more paranoid, I will increase it myself. Well just only, you know, not that much, just one more tablet. So for the most part, yes, I am on, you know, the right dose, but I do increase it slightly when needed.
For some medication alone was not enough; they felt it should be combined with other treatments such as talking therapies. One man said he was helped by both medication and prayer (see 'The role of faith, religion & spirituality'). Some thought doctors were only interested in prescribing medication and felt they received little other support with their mental health problems, or with medication side effects. One man thought doctors treat people “like a machine”. One woman, however, had been refused medication despite seeing her doctor several times until she saw another doctor in an emergency.
Some people had been taking medication for many years (over 30 in some cases). One woman had been taking an antidepressant for a few weeks. A few had been told to expect to be on medication for the rest of their lives, which caused them a great deal of concern. One woman could envisage taking medication for a long time, but hoped to eventually stop taking it. One man felt he was taking too many tablets and wanted to stop taking his antidepressant, but thought he would always need a sleeping tablet so that he could continue to work.
For more experiences of taking anti-depressant medication see our websites on ‘Depression’ and ‘Experiences of anti-depressants’
Last reviewed September 2018.
Last updated June 2015.
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