Medication: Effectiveness and side effects

Most people we talked to had taken medication at some point in their lives, with almost everyone taking some form of medication for severe mental health problems when we spoke to them. Although people had tried different types of medication over their lifetime the main ones people spoke about were antipsychotics, antidepressants, and mood stabilisers. Despite good scientific evidence for the use of psychiatric medicines in appropriate conditions, strong critiques of their use exist within scientific and popular literature, particularly about efficacy and unwanted side effects. This Talking Point reports on the experiences of taking different psychiatric medications of the particular group of people we talked to. It is important to note that people were not selected on the basis of their opinions about medication.

Types of medications

Although antidepressant medication may help many people, it depends on the particular type of antidepressant, and the dose. Some people do not find antidepressants helpful at all, no matter what type or dose, and some perceive them and other medications to be harmful. Even when antidepressants are seen to work it can take several weeks for them to become fully effective. This can be difficult for people in a state of distress and desperate for something to help. Sometimes other medicines such as those to treat anxiety are used as a temporary supplement, for this reason.

Antipsychotics, also known as ‘major tranquilisers’, are prescribed to people with a diagnosis of psychosis and can help to lessen some of the distressing experiences people have, like hearing disturbing voices that others don’t hear. Antipsychotics can be given by tablet or slow release (depot) injection. Mood stabilisers include lithium and several other types of medicines (some are also anti-epileptic medicines) that are used in bipolar disorder and schizoaffective disorder to prevent mood swings. Along with the experience of dampening of emotions, the medicines can prevent episodes of ill-health and also suicidal behaviour.

Some people we spoke to had tried many different medications over the years; as Lisa said, ‘I feel like I’ve tried all of them’.

Cindy said she had tried many different medications over the years and finding the right one had been a case of ‘trial and error’. She now has one that suits her.

Those with experience of various medicines over the last 15 years or more felt that medications had improved over time. Chris described how when he was first diagnosed with schizoaffective disorder, he was given ‘old’ medications, ‘all the nasty stuff’. In his experience new drugs have fewer side effects. Evan, who has tried many medicines since he was first diagnosed in 1977, said in the past he was given very high doses of medication, which had a highly sedative effect. He described how people had to be given medication in hospital at high doses, then have the dose reduced to ‘maintenance levels’ before they could ‘function in the community’.

Effectiveness

There was no single medication that suited everyone and people could have very different experiences on the same medication. However, quite a few people mentioned that some of the medication they had taken had worked for them. Helen, who was diagnosed with manic depression (or bipolar disorder), said although she feels a bit ‘hyper’ on her current antidepressant, she wakes in the morning feeling like her ‘old self’. Michelle said her antipsychotic drug ‘does get rid of my voices and I do feel better on it’. Niall, who had been diagnosed with obsessive compulsive disorder, said his antidepressant was ‘the best one’ for dealing with this.

Tanai called her current antidepressant medication her ‘miracle drug’. She said she no longer has ‘depressive episodes’, but doesn’t think it’s an easy drug to come off.

For some people, the effect of taking a medication could be immediate. Taylor, for example, said, ‘within half an hour I’m feeling much better’. For others, it could take weeks or months to take effect.

Nicky described how it took a while for medication to bring her ‘back to normal’, but the ‘turnaround’ was ‘sudden’.

People spoke about being on different medication that had provided relief for many years. Maria who has been on lithium – ‘the stable one’ – for 25 years said, ‘I can’t remember not being on it’. She described it as a ‘good mood stabiliser’. Charlie, Chris and Brian described finding the antipsychotic medicine clozapine helpful over the long term. Chris said ‘at the right dose’ it did a ‘marvellous job’ and had ‘kept [him] out of hospital’ for over 10 years. Charlie said she had been taking it for about 12 years and stated that it ‘changed [her] life’.

Quite a few people however mentioned how they had only derived temporary or partial benefits from medications they had been prescribed. Ann felt that her medication was a ‘bit of a bandaid solution’. Although the medication Jenny was taking stopped her from ‘getting down in the dumps’, she said it has ‘never stopped the voices’.

When one medication didn’t work well enough, many people described stopping and starting with different medications. Ann had a bad experience when she transitioned to a new medicine regime, which she called the ‘washout period’. She became ‘acutely suicidal’ and was hospitalised.

Taylor described coming off one medicine and starting another as ‘the worst part’.

Some people described how they experienced little or no effects from medications they had tried. Susanna commented, ‘I didn’t notice any changes whether I was on it or off it’. Anna and Lisa tried antipsychotics, antidepressants and mood stabilisers but found none of them worked for them.

Brendan’s psychiatrist tried lots of different medication with him. He described how changing medication often meant experiencing new side effects, but he said he never experienced any ‘great change’.

For others it could sometimes be difficult to tell whether it was the medication or something else happening in their lives that was making the difference.

Ann noticed she was able to concentrate more on things, and found her mood swings more predictable, but thought there could be other explanations for that.

Unwanted effects (‘Side effects’)

Regardless of whether a medication was effective, many people spoke about experiencing side effects. These could range from ‘unsettling’ to ‘unpleasant’ (dry mouth, sun sensitivity, rashes, facial tics, muscle spasms, stomach cramps) to debilitating, embarrassing or depressing effects (weight gain, loss of sex drive, erectile dysfunction, incontinence, sedation, fatigue). Side effects for some were so debilitating that people felt they outweighed any benefits derived from taking the medication. People we spoke to said that while most side effects went away when they stopped taking the medication, some took a while to recover from. Ann described how she was still trying to lose the extra 30 kilograms that she put on when she was taking ‘a ridiculously high dose’ of the antipsychotic medicine olanzapine.

When Simon was given a ‘modern’ antidepressant he said he ended up in intensive care and ‘nearly died’.

Quite a lot of people spoke about the individual side effects they had experienced while taking particular drugs. Brendan said lithium ‘always makes [him] thirsty’. Niall recalled having ‘violent thoughts on PROZAC (fluoxetine)’. Tanai described her experience taking the antipsychotic medication, quetiapine: ‘I’d wake up and I’d be hungry, like I hadn’t eaten in a week. I felt like I was hollow from the bottom of my ribcage to like the bowl of my hips. I felt like I’d been carved out. I was so hungry’.

Side effects that were not properly explained to people taking medication for their mental health were all the more difficult to deal with.

Lisa said she was not advised about what to expect from antidepressants. Side effects like putting on weight were particularly problematic, given her eating disorder.
Carlo said a mood stabiliser he took made him sweat and lose his sexual drive completely. He found it difficult knowing whether it was just an effect of the drugs, or not.

However, the people we spoke to often accepted the side effects because they felt medicine helped them, or they were able to manage the side effects by taking other medication (e.g. to stop constipation). Chris said clozapine made him sleep 10 hours at night and this was ‘good’ for him. Sarah has accepted the side-effects she experiences from quetiapine, because ‘it could be so much worse’.

Taylor didn’t like feeling ‘like a zombie’ because of the antidepressant she was prescribed, but said it was the ‘best option’ at the time.