Most people had been prescribed a number of different medications over the time they had been having psychotic experiences. These included:
- Anti-psychotics (e.g. olanzapine, risperidone, quetiapine, aripiprazole)
- Anti-depressants (e.g. citalopram)
- Benzodiazepines (e.g. diazepam, lorazepam, clonazepam)
These medicines are usually prescribed by a psychiatrist, and should be regularly monitored. You can read more about taking anti-depressants here
. Finding a medication that works can often involve trial and error, and it can take months to find the right dosage or best combination of medications to suit a person. Most people find medications that are helpful for their symptoms, although, a few of the young people we spoke to said they had never found ones that suited them.Effects of taking medication for psychosis
Some people found medication provided a short relief from their psychotic experiences. Others found it stopped hallucinations, delusions and paranoia for longer periods or reduced them and it could also “kick start” their recovery. Quetiapine (antipsychotic) helped reduce the number of voices Dominic heard from seven to three, and helped him to sleep. However, most people felt that medication was a part of the solution rather than solving everything. Nikki says medication takes her from “bad to not as bad” and she uses self-help techniques
to get herself from “not as bad to better”: “So it doesn't do all the work, but it helps”.
People we spoke to were often prescribed different types of medication (anti-depressants, benzodiazepines and anti-psychotics) together and some were able to compare the effects of each. Green Lettuce says benzodiazepines like lorazepam and diazepam help him more than the antipsychotics and diazepam has longer lasting effects. Some felt that anti-depressants interfered with anti-psychotics or made them feel worse. Andrew X, whose psychosis is linked to depression and low mood, finds that anti-depressants make the low mood worse before it makes things better.
Sometimes it can be hard to say if it is the medication or other things that are having an effect. Joseph was taking medication for a long time before he noticed any effects. He thinks it definitely got him “on a level” but that he was getting better before it started working. Becky (who was diagnosed with Borderline Personality Disorder) takes an anti-depressant (citalopram), which works better for her than other medication she has taken, but thinks feeling better could also be down to her own frame of mind and therapy she’s had.
Anti-psychotic and anti-depressant medication often has potential side effects which can range in severity and intensity. They affect people differently and whilst some people can tolerate side effects or do not experience them at all, sometimes they can make people feel worse. For example, the effects of some medication can be similar to symptoms of depression and it can take a while before a person feels any benefits.
Side effects people experienced included:
- Tiredness, drowsiness and oversleeping or insomnia
- Dizziness, dribbling, muscle cramps and nosebleeds
- Weight loss or weight gain and increased appetite
- Memory loss and loss of concentration or the brain slowing down
- Depression, low mood, and suicidal thoughts or feeling “high”
- Serious health problems such as increased cholesterol, hole in the heart, seizures.
People could experience side effects regardless of whether the medication was effective in treating their psychosis. While olanzapine (antipsychotic) worked for Hannah, it made her gain two stone in two months because she felt hungry all the time. Although risperidone (antipsychotic) put “the breaks on” Andrew X’s psychotic experiences, he felt it “suppressed” his mind at a time when he was trying to understand what was happening and regain his identity. Olanzapine didn’t work for Joe but made him feel “high as a kite, too stoned out of my head to have my own thoughts”. Becky said, “I was on so much medication, I didn't know where I was”.
Some side effects, such as drowsiness, can be managed. Quetiapine (antipsychotic) made Hannah sleepy, but she took most of it at night so that it didn’t affect her so much during the daytime. But this wasn’t always the case. Andrew X said he felt drowsy all the time and worried that others thought he was just “lazy”.
Sometimes additional medication was prescribed to help with side effects. Fran takes anti-psychotic medication, and also takes other medication to help alleviate stomach problems caused by the antipsychotics. Lucy, who experienced psychosis after suffering from two head injuries, said she had the worse possible side effects from every medication she took. Staff on her mental health team didn’t seem to listen to her when she complained about the impact that side effects were having on her and eventually she stopped taking anything.
Impact of medication on sleep
Lack of sleep, or very disrupted sleep, during psychotic experiences was mentioned by many people, with some getting only one hour sleep a night or not sleeping for three or four days. Some people were given sleeping tablets and others found that sleepiness or drowsiness was a side effect of medication they were taking. Ruby says that quick release quetiapine helps with her insomnia as well as the psychosis. But this wasn’t always the case: for example aripiprazole (antipsychotic) made Joe sleep less.Deciding whether to take medication for psychosis
When their psychosis was at its worst some found that sleeping tablets initially didn’t work. On the other hand medication sometimes made people feel too drowsy or sleep more than they wanted to. Luke, who was diagnosed with bipolar disorder was given lorazepam (a benzodiazepine) injections when he was in hospital but he still didn’t sleep. However, after a second injection he slept for four days. He was in a high security ward taking regular lorazepam after that and remembers dribbling and being “in a coma, pretty much”. He now relies on medication to sleep. Nikki slept 20 hours a day “went to school and I'd fall asleep at school I'd come home, fall asleep and that was it … I was just sleeping all the time”.
Some people we spoke to said they had never found a medicine that worked well, found the side effects outweighed any benefits or didn’t want to take medication at all. Sameeha used to hide medications under her tongue in hospital so no one knew she wasn’t taking them. As soon as she was out of hospital she refused to take any more because she wanted to rely on her own “mental strength” to get herself well.Changing medication
Others said they forgot to take tablets or didn’t take them despite the benefits. Andrew X said: “I used to forget to take my medication quite a lot. Sometimes I did genuinely forget, but other times I just forgot. Because I didn't wanna take them.“ If people regularly avoided taking their prescribed medication and were still unwell, medication was sometimes given by injection, or by professionals who visited people at their homes to ensure they were taking it. When Andrew Z didn’t take his medication, the “step up” team came to his house to give him a tablet that melts on the tongue. A few people were not taking any medication and no longer had psychotic experiences. Andrew X no longer takes medication and doesn’t hear voices any more. He felt that stopping the medication, which had made him drowsy, allowed him to be a “human being again” and rebuild his social networks.
Most people had their medication reviewed at some point. Nikki remembers her psychiatrist asking her to rate how she was feeling on a scale of one to ten and other “weird questions” to try and calculate how effective the medication was. A few people had their parent, carer or social worker in the meetings with psychiatrists when they were discussing a change in medication and found that useful because the carer knew their daily routine and their preferences. Luke said his carer acted like a “medium” between him and the psychiatrist.
Changing medication can be a slow process and it can be some time before a decision is made to change. Hannah was on an increasing dose of one medication for six months with no effect before she was changed to another that worked. It’s important that this is done under supervision and usually involves taking less of one medicine gradually before starting a new one.
Some people wanted to come off medications because of the side effects or because they didn’t feel any benefits. Once Lucy had decided she wanted to stop taking an antidepressant she was “just quite kind of firm” with her GP and said if he refused she would just stop taking it, but she would prefer if he would help her come off slowly.
Coming off medication can be a very difficult time. Lucy said coming off quetiapine was “awful” and that she was so sick for nearly three weeks that she couldn’t even sip water and had to stay in bed. Stopping taking medication could also mean psychotic experiences returning. When Hannah was taken off olanzapine because of the side effects, she said that her visions “came back with a vengeance”.antidepressants, antipsychotics and sleeping tablets here.
You can find out more about