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Psychosis (young people)

Medication for Psychosis

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.
 

Green Lettuce tried many different medications and said that most didn’t help. Seroquel (quetiapine) only made the voices go away for a short time but diazepam helped a lot.

Green Lettuce tried many different medications and said that most didn’t help. Seroquel (quetiapine) only made the voices go away for a short time but diazepam helped a lot.

Age at interview: 25
Sex: Male
Age at diagnosis: 20
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Risperidone didn’t do much for me really. It just made me feel worse, it didn’t do much for the voices, like you think, but the Seroquel, at first worked a bit. But it only did, it normally lasted the effects as well for like half an hour, but I, you know, all the voices all the time, then it just wore off. But I was taking a lot of it and it wasn’t powerful enough to be honest.

And the rest of them well, quetiapine, I can’t remember, if that, I don’t think it helped, but I can’t remember totally. And Abilify (aripiprazole), didn’t do much. The only thing that’s helped really is time, I think.

And what did it feel like taking this medication?

It made me feel worse than I did before normally.

It what ways?

Just like, a bit more depressed than, didn’t feel as good. I think they liked blocked dopamine serotonin receptors in the brain. And I don’t know really.

So I got prescribed diazepam by the doctor, and that helped, that’s helped a hell of a lot.

Oh really.

Yes. That’s actually taking all the voices and stuff away actually.

Really?

Yes. Because it lasts so long. If I take it, like I take half and half like, half about ten and then half about 12 or something, of what I take, and chills me out a lot and makes it easier to sleep. And it lasts into the next day, well into the next day. Nearly until I take it again. 
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.
 

Nikki prefers taking anti-depressants to taking anti-psychotics. They make her feel “lighter” and she is better able to manage her voices.

Nikki prefers taking anti-depressants to taking anti-psychotics. They make her feel “lighter” and she is better able to manage her voices.

Age at interview: 19
Sex: Female
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So what was that one?

The one I still take now it's an antidepressant. I find that antipsychotics don't really work for me and it's when I can manage other things that I can manage hearing voices and things. 

Brilliant. Okay. So it was the antidepressant was that gives you the best benefits.

Mmm—

Yeah. And then which, do you know the name of the one that you are on?

Yeah, it's called, Sertraline. 

How would you describe the benefits when you started taking that?

I felt like it [sighs] helped me to feel a bit lighter. Like a bit more, you know, less weighed down by things. Helped me to feel a bit less tense. I dunno, I feel like it helps me to kind of stay at an okay level and then the rest of it comes from myself, making myself happy. 

And so that Sertraline is that one a day or how many tablets do you have to take or when do you take them?

I take two a day in the morning. 

And does it fit in with your routine okay?

Yeah, it's the, I'm not too strict on the times. I just take it when I wake up, really. 
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. 
 
Side effects
 
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”.
 

Dominic said one medication he took made his arm stick in an uncomfortable position above his head and another made him feel suicidal.

Dominic said one medication he took made his arm stick in an uncomfortable position above his head and another made him feel suicidal.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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Did you have any medications that you remember were particularly good or bad?

Yeah, I've had Abilifi, Abilify (aripiprazole) was, was horrendous. I, I think for two weeks, just two weeks and I, it had to be the medication, 'cause it couldn't be anything else. I'd be sitting here like this [looking forward] and all of a sudden I'd be doing this (head turned abruptly to right). So my neck would just completely cramp. And I wouldn't be able to move my neck back for about an hour, that's just how I’d be. 

Crickey!

There was another one, olanzapine made me so, first it made me really fat. It made me put on so much weight, but it increased my suicidal thoughts a lot. 

Wow.

To the point where I started planning out my suicide. Because there's a lot of different steps to suicide. There's, I'm gonna kill myself. There's I'm gonna kill myself with this. And then you've got, okay, I'm gonna kill myself today. Then you get- there’s planning and then there's actually going out to a bridge and thinking about doing it. There's a lot of different stages. And, with the olanzapine I was, I was planning it out. I was ordering stuff online to help with it. And I was really going for it. And I luckily I had a meeting with my therapist just before I was planning on doing this and I said, look, you've been great. You've been amazing. What's happening next? Is it about you? What's happening next about me? And she knew, straight away what I meant. And she put me on house arrest 
 

Joseph describes a “tin man” effect of one medication that made him feel “dull”. He was prescribed another drug to take with it to lift his mood but that made him hyper.

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Joseph describes a “tin man” effect of one medication that made him feel “dull”. He was prescribed another drug to take with it to lift his mood but that made him hyper.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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And the particular drug I was on gave you a - because it's used to treat Parkinson's, so gave me a tin man type effect. So your hands were very straight. 

What is that called, do you remember?

Haloperidol. 

Haloperidol?

Yeah.

So was that the one they had started you off?

Yeah.

And that was now kicking in 

Yeah, pretty much. Yeah. Yeah, so when I - As far as I know, when I was first put on the haloperidol, I was given clonazepam as well. And they were saying the haloperidol is sort of the obviously long term antipsychotic. And then the clonazepam is just to, it’s used as an anti-anxiety, and it's just - not that it was really used to treat anxiety for me, but it was just to sort of level me out slightly, I think. 

So is that not long term, maybe?

That was only for a few weeks.

Few weeks?

Yeah.

And did that have any effect, or?

It's hard to say. I'm sure it did. But honestly, I've got nothing to compare it to.

Mmm. So this haloperidol, you felt that it was giving you this tin man effect?

Yeah. So it was definitely a - It did the job of an antipsychotic. In the sense it did just dull everything.

Right.

And then the weeks went by at home, taking this, where I felt - yeah, you're just very low. And I suppose depressed. Maybe I wouldn't call it that at the time, but just definitely very dull emotionally, dull everything. Couldn't sort of easily do normal activities. And then I said this to the doctor, and they said "Oh, well how about I prescribe you some procyclidine? And - which is supposed to alleviate some of the symptoms, the negative symptoms of the haloperidol. 

What's it called?

Procyclidine.

Procyclidine. Mmm.

Which ended up being a bit of a disaster for me. Because okay, it reduced the symptoms - and I took it - for the first couple of hours I felt really great. Finally felt a bit more normal. Like the haloperidol had been weighing me down, I felt a bit better, that I could talk a lot more easily. 

And then the more it kicked in, the more I talked, the more hyperactive I got. Couldn't watch TV, because that was sensory overload. And everything they're saying on there, like - particular bad situations in war zones around the world - I would watch it, and obviously everyone watches it and doesn't like seeing it, but it was - it just hit me so much harder. I just - And then, yeah. That hit me really hard, seeing that. So I couldn't really watch TV. And I just, yeah - spun out. And then I just couldn't sleep on it. And it was just a really bad move, taking it. So then I went back, and I was so happy to finally be back on the haloperidol. And but then of course, then that - I just kept on going up and down. So then I kept sinking. Knowing that I didn't to take to the procyclidine again, but it was still in the cupboard, and I was so fed up of the blunted feeling, that I just then took the procyclidine again. And the same thing happened. And that was the last time I took it, because it - yeah, I just knew it wasn't the right thing to have. And I don't really agree with treating side effects, negative side effects of a drug with another drug, which also causes negative side effects. Which you then might need another drug. - Phoned the doctor about it, saying I'd like to just come off. I could have easily not taken it. I think maybe there was the odd day, I just didn't. But on the whole, I did as I was told. I went with it, I took it. I was saying to the doctor, "Listen, I'm taking it. But we've really got to reduce." And it did take a lot longer than I thought. Months went by, and it was just - The appointments with the doctor were so spread apart, you just lose hope. And then you'd still have to take it. And there wasn't really much to fill the day with. And then. So yeah, it was a particularly tough time, post-hospital.
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.
 

Before Dominic took quetiapine (anti-psychotic) sleep was “a myth” and he had panic attacks at night because his voices would “kick off”.

Before Dominic took quetiapine (anti-psychotic) sleep was “a myth” and he had panic attacks at night because his voices would “kick off”.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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Quetiapine (anti-psychotic), it's also called, Seroquel. And it works for me. It… before it, I had insomnia every night, around eleven o'clock I started with panic attacks, because I knew I wasn't gonna sleep. 

That was the side effect of something else.

No, that was just in general. After I got diagnosed, sleep was a myth for me. As soon as I, as soon as I, because I, I there it was a symptom of a lot of different things. I was avoiding the voices all day and then going to bed, the moment you went to bed, there then more sounds and so the voices happen. So I was getting really panicky about going to bed, 'cause I knew that's when it was gonna start kicking off. So I ended up not going to bed. If I fell asleep on my computer chair, brilliant. If I didn't I was up all night. Then she put me on quetiapine which stopped my sleepwalking, 'cause I would sleep walk sometimes and I'd do crazy things. In my sleep walking state, I've put a knife to my, to my brother's throat. I've gone downstairs, locked the front door and got duct tape and completely covered the letter box with it [laughs] I've walked into my mum and dad's room and just gone over their bed like that [demonstrates leaving over]. I've done a lot of crazy things. And this quetiapine helps with that a lot. I don't have problems sleeping any more, which is just great. But what it does for me is it reduces the amount of voices I have. I no longer have seven voices.
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”.
 

Andrew Z had always managed on 4 hours sleep and liked the fact that it took a few hours to go to sleep each night. But an anti-psychotic (olanzapine) made him sleep for 12 hours and gave him surreal and distressing dreams.

Andrew Z had always managed on 4 hours sleep and liked the fact that it took a few hours to go to sleep each night. But an anti-psychotic (olanzapine) made him sleep for 12 hours and gave him surreal and distressing dreams.

Age at interview: 23
Sex: Male
Age at diagnosis: 20
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Before I ever had psychosis, I was on like, you know, I was four hours sleep at night. I was going to bed at about two or three o'clock in the morning. I've always, well, I wasn't gonna sleep then, it was always all my life taking about two hours to get to sleep at night, other than when I'm on the anti psychotics and I was on, I was sleeping about four hours a night. When I ended up with the psychosis I slept for like an hour at night. One of the things I don't like about the medication is it does make you very sleepy, also makes you very hungry. And it makes me very sleeping for like 12 hours a night and I kind of all my life have liked the fact that it take me for hours to get to sleep at night. You know, 'cause I sit there and I start to actually think and reflect on the day and when I go on the anti psychotics, they send me to sleep. They zonk me out quite quickly. So I often feel quite frustrated the next day when I wake up, 'cause I, I wanted to reflect on certain things during the daytime. And I feel like I've gone to bed and I didn't even get a chance to do that. 

I don't know whether this is a common side effect, but it seems to create quite vivid dreaming. Like before I was- it might have nothing to do with olanzapine, it might something else going on in my life or something. But, I imagine it's the olanzapine, because I, you know, often have, sometimes I oversleep. It seems to, doesn't seem to affect—I take it late, I take it at night but it doesn't seem to kick in and I wake and struggle to get up in the morning. Sometimes I overslept to about twelve o'clock or often overslept to twelve o'clock. But I was, I used to leap out of bed at like 7. Set my alarm at 7 and I'd leap out of bed in the morning and so I know it's definitely the Olanzapine. But I been experiencing, it was quite distressing having these quite surreal dreams that are quite vivid in the morning where you're trying to get when you're trying to wake up. It's kind of almost hallucinary, because you are kind of semi awake and you kind of start to develop these quite weird dreams, yeah.
Deciding whether to take medication for psychosis
 
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.
 

Joe thinks his hallucinations are his brain’s way of showing fear. Taking medication is like stopping his “fight or flight” response and isn’t going to help.

Joe thinks his hallucinations are his brain’s way of showing fear. Taking medication is like stopping his “fight or flight” response and isn’t going to help.

Age at interview: 23
Sex: Male
Age at diagnosis: 21
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So, ultimately the bits of the brain - or at least in her opinion are - that deal with psychosis are - and I agree with this - about fear. It's fear of things happening, fear things that won't happen, etcetera. And it is that - Seriously, when you get a hallucination it is that complete fight or flight. You're either going to just rail against it, or flee.

And it - So, hallucination is probably a bit of your brain that doesn't speak the same language you do, warning you about something. So, she said, it's like sitting on the sofa watching TV with one of your friends, and an enormous poisonous spider climbs up, and you say "Watch out for that." And medication in that scenario is someone getting a big - that person getting a big awful dirty sofa cushion, and just pressing it on your head so you can't say anything. And I think both I and my voices really agree with that, because it's [sigh].

Yeah.

At the end of the day, all your voices are still a part of your brain, they still have your bests interests at heart, even if they don't know how to tell you. And I think making peace with them that way. So instead of just putting a shield wall up and saying 'nah', saying 'okay, I understand why you think that, but I'm fine', has been a lot better for me in the long run.
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.
 

Chapman used to stash his tablets and not take them because he was smoking weed and drinking at the time. Now he has a depo injection fortnightly.

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Chapman used to stash his tablets and not take them because he was smoking weed and drinking at the time. Now he has a depo injection fortnightly.

Age at interview: 23
Sex: Male
Age at diagnosis: 20
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Do you know the name of the medication that you’re taking then?

Consta risperidone 50mgs.

Right and do you take that 50mgs?

Fortnight.

A fortnight?

Yeah.

Okay is that, you take a, have an injection or something?

Yeah.

Okay a depo, is it a depo?

A depo yeah.

Okay. What’s that like having that injection?

It doesn’t make a difference.

No. Do you mind going for the injection?

I don’t mind.

No?

No exactly. 

Okay, okay would you rather have tablets or…?

If, I have been on tablets but I, got so bad that I wasn’t taking them, I’d piled them, stashed up, I used to get it delivered at home so my social worker said that I should start getting an injection, that that would be easier because I wasn’t taking my medication.

Okay

My medication as well wasn’t, I don’t think it was making a difference.

Why weren’t, why weren’t you taking it because…?

I was drinking so I thought if I was drinking it would, it would affect the way the medication would work. 

Right I see.

And I was taking drugs as well.

Right, what kind of drugs?

No just weed.

Yeah okay. Did that help or…?

It makes me even more paranoid. 

Right 

Makes me even more paranoid when I smoke weed.
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.
 

Lucy found that it was only when she stopped taking antipsychotic medication that the voices stopped.

Lucy found that it was only when she stopped taking antipsychotic medication that the voices stopped.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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And on a kind of day to day basis now, how do the symptoms kind of manifest?

It - At the moment, for about a month and a half, they've been almost gone. So I get the occasional like internal voice/thought that's not me. So, much, much better than it used to be. I found that as soon as I stopped taking the psychosis medication most of my symptoms went away [laugh]. Which I think is quite unusual. But can happen. So I think now I'm left with kind of just the - kind of the mood issues. And still struggle with things like concentration. But I think the - like the hallucinations have stopped completely now. And the external voices have stopped completely too. So, yeah.
Changing medication
 
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”.
 

For a time Andrew X’s combination of medications suited him, but when he moved to adult mental health services his psychiatrist didn’t review his medication and Andrew X stopped taking it. In hindsight he wishes he’d come off gradually.

For a time Andrew X’s combination of medications suited him, but when he moved to adult mental health services his psychiatrist didn’t review his medication and Andrew X stopped taking it. In hindsight he wishes he’d come off gradually.

Age at interview: 24
Sex: Male
Age at diagnosis: 14
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But I met up with a new psychiatrist who said, well, no, no, no you don't need this at the moment. You know, You need a different combination. So I was transitioned onto Abilify or aripiprazole fluvoxamine, not fluoxitine, fluvoxamine and melatonin to help with regulates sleep and that was a wicked combination. Wicked in terms of really good. It was like the psychiatrist knew exactly what I needed and prescribed me exactly what I needed. 'Cause that combination it, it helped build my motivation again. It helped get my energy levels back. The side effects wasn't as severe. The fluvoxamine helped with some of the obsessional thinking that was going on. And by talking to me, like a human being again, the psychiatrist sort of was able to work out what I actually needed. 

So by interacting with me as a human and as a normal person, he managed to get the information he needed to provide the right combination of medication. And he did it really good as well. So, like the Risperdal (risperidone) was up here [indicates it being high] and then he started the Abilify (aripiprazole) on top of that. And then he slowly reduced the Abilify and increased, slowly reduced the Risperdal and increased the Abilify. Increased the Abilify again and reduced the Risperdal. It went up like that until the Risperdal was gone. I also had PRN, which I took when I needed to take it. So I think I was on lorazepam PRN which really helped me deal with some more acute episodes. But the, the fluvoxamine, melatonin and Abilify worked really well at that time and it worked well until I got transferred over to adult services, completely. And then had no psychiatry input. So whereas my previous psychiatrist was adjusting medication when I needed it. He was talking to me about it. Talking to me about the side effects. The new psychiatrist wasn't interested in any of that. It was like, well there's the medication you're on, deal with it. If you don't wanna take it that's your choice. And as time went on with this combination of medication the side effects started to become a lot more real. 

So, started to get the same side effects as I did on Risperdal as time went on. I was like, one day I just said, you know what, I'm not gonna take this med—tablets any more. And it was simultaneously the best and worst decision I ever took. It was the worst decision, because I nearly killed myself as a result, 'cause it was, it just threw my chemical balance all over the place, it weren't, it weren't a wise thing to do. 'Cause I didn't tell anyone either. So I did it without telling anyone. I think if I could change anything about my journey it'd be that I'd come off my medication better, so I'd tell someone and do it gradually as opposed to just coming off it, 'cause that really it caused me a lot of physical and emotional problems, really.
You can find out more about antidepressants, antipsychotics and sleeping tablets here.
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