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Mental health: ethnic minority experiences

Hallucinations & delusions

Here, people talk about what it's like to experience symptoms associated with schizophrenia, schizo-affective disorder and psychosis. Two types of symptoms are associated with schizophrenia: so-called 'positive' symptoms, including hallucinations, delusions, disturbed thinking and paranoia, and 'negative' symptoms, including tiredness, loss of concentration, lack of energy and motivation, few facial movements and flat emotions. Not everyone who has a particular condition will experience all the symptoms associated with that condition. This summary focuses on positive symptoms; negative symptoms are discussed elsewhere (see 'Anxiety, negativity, mania & loss of energy'). People with depression and other conditions may also experience some of the symptoms discussed here. 

Hallucinations (including hearing voices)
Many people talked about experiencing hallucinations: hallucinations are something that you hear, smell, feel or see - when there isn't anything or anyone there to explain where it came from. As one man put it, “my senses misfunction”. Most of the people who described hallucinations had been diagnosed with some form of schizophrenia or schizo-affective disorder. A few had been diagnosed with anxiety, depression and panic attacks. 

What's it like to hear voices?
People said hearing voices was like: “a song that keeps on coming into your head”, “it's not like it's your own thought, it's as if something has been saying something to you”, “I could hear it from within me like my own spirit saying something to me”, and “it's like my own kind of thinking but it sounds like it's outside of my head”. One woman, who was diagnosed with depression and anxiety, said she heard, “funny voices and noises” and heard “things which nobody is speaking”. 

 

Niabingi describes what her voices say and compares hearing voices with "a song that keeps on...

Niabingi describes what her voices say and compares hearing voices with "a song that keeps on...

Age at interview: 42
Sex: Female
Age at diagnosis: 25
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I, you know, I thought was just you know, me sort of you know, thinking, thinking but eventually now I, these thoughts became sort of, well they felt, the felt like, they became uncontrollable and they became and they felt, and still feel like they're separate to whatever I am thinking because I don't know what happens but they sort of, well you know, I might be thinking of a cup of tea and they'll be thinking, you know, saying something completely different. And it sounds, it sounds, it's the most similar thing I can get it sounds like they're completely separate, that they're coming in from outside you know, and you know, and that's why I call them the voices because they feel like they're coming in from outside. But the closest thing that I' I've tried to explain to people what they're like, is like when you get that, that song in your head, you know, this, you know, a song that keeps on coming into your head, no matter what you do there's, you find yourself singing it or thinking about it you know, the words and that's what the voices are like a bit, uncontrollable, they're always there, you know. And you try and think about something else and yet they're always there with this, not repeated words because they, they do say lots of different things but yeah sort of always there and almost as if you know, and for me I believe you know, with a life of their own. But the closest I can say is that people get that, that song in their head or a phrase or whatever and they can't get it out of their head for a while, a few hours or whatever or morning or something and that's the closest that I can sort of like explain to people it's like to hear voices, for me anyway, yes.

What kind of things do they say?

Yes well like I said' well they say things like the Queen is involved in a conspiracy to kill black people' they talk about good and evil' they talk about my family yeah they, they advise me on how to live you know, what foods to eat' well they would tell me to go places when I was sort of just running round, three years after the first, after, after the very first time that I left hospital I left without permission and I was sort of free for three years and they would tell me where to go and you know, and you know, and I'd go on a journey and they'd tell me when to come back and then you know, when to eat and things like that, you know'

First the voices start off all pleasant and friendly and you know, all, everything is all hunky dory and then [Laughs], and then they start getting nastier and nastier and nastier and then usually you know, they, they start off all friendly and I start saying you know, and then they get, well they tell, start telling me what to do.

 

Devon says the voice he heard sounded like "my own spirit" and also described believing that the...

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Devon says the voice he heard sounded like "my own spirit" and also described believing that the...

Age at interview: 49
Sex: Male
Age at diagnosis: 22
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They asked me if I was hearing voices. But, I did hear something but it wasn't a voice, it wasn't like a voice out there. It was my own inner self, my own inner' it was coming from me. I could hear it from within me. Like my own spirit saying something to me. He would say things like, 'Stand up off the chair.' And I used to stand up. If he said, 'Sit down.' I sat down. so for someone our there it would look odd for me to stand up and sit down like that all time. Occasionally I would do that. So it was, 'Oh he's got a mental problem.' Right. So the other thing was, 'Give your cigarette to Tom over there and give him one.' So I give him one, and then Tom would come back and say, 'Can I have another one.' And then I would say, 'No.' Not laughing at the voice myself and say, 'Give him one.' So I would call him, 'Tommy have another one'

I was hearing my own inner self saying things to me or just talking, it was no other voice out there. It was within me I could hear it. And when I was watching TV I thought it was talking straight to me. I thought on the TV they were actually talking to me. I said, oh they are talking to the person out there to the viewer. So yes, but I just thought they were talking to me especially because what they were saying, I began to hear what they were saying in the news, because before when I the news was on. I mean I was watching it but I am not actually watching it because the news is boring. You know, I was a young person, but when I got the illness, I began to get ill, I actually listened to the news and the newsreaders they were talking to me. I was thinking these was the newsreaders talking to me, so I was just used to listen to what they were saying, and what they were saying was depressing, it's the news, so that is what made me depressed.

Voices can be a constant presence, and may say positive, negative or neutral things, or even give orders to the voice-hearer. Voices may even tell the individual to hurt themselves (or others) and some people had done so.

 

Lorenz also hears different kinds of voices and they mainly say "good things" but can tell him to...

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Lorenz also hears different kinds of voices and they mainly say "good things" but can tell him to...

Age at interview: 50
Sex: Male
Age at diagnosis: 20
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The thing, the worst, to tell you the truth the majority of the voices I used to hear tell me good things, tell me, 'Get better, you're a bit ill [Lorenz], you need to go into hospital.' I think that's in my own thinking voice but sometimes I had one where it told me stab myself'

No I used to think, I always never known about hearing voices as such or I think, I just this it's my own thoughts coming through my head, muddled, mixed up, confusion, for my own thoughts of thinking. And it's not until the voice seems to come from a distance into my ear drum or close into my self, into my mind and it's a different from my own voice, it's when it becomes different from your own voice and one was lady's voice I used to hear. A very strong male voice as well dominating, wanting to control, telling me to do certain things. And these were when I was, though, I thought this is not the norm because I brought up hearing my own thinking voice, you know, in my own self, hearing my own self so when it comes away from my own thinking voice I said that is not the norm. So I never see that as the norm. For me it's not the norm and I would not associate anybody else hearing anything, coming outside themselves or close into their minds and not their mind, themselves talking to them. Another voice, another accent, these sort of things. So you, you know something weird is happening.

So was there a point before it seemed as if it was coming from somewhere else and it was a different voice from your own, was there a point where it was, it was your voice but it wasn't quite right, it was different from the regular, you know, thinking what you're going to have for your tea kind of thing?

Yeah, yeah mine came, basically I was thinking normally about like a prayer. I think you get a bit of a voice thing when you pray, people won't believe it but you do, you get a sort of voice, you know when it's your own voice and it's not a God thing coming through your head to say when you're praying it's, it's God telling you to do things. This is where I was in bed praying about certain things, I can't remember what it was, this was, and then when I, when I went to sleep I got woken up with a voice talking to me, not my own voice, not my own mental capacity voice and this is where I was, got me frightened, not know, oh my God I thought what on earth is this, talk into your head and just when you open your eyes and you put the light on the light seemed to shine bright, glow bright, I mean these sort of things, 'Oh what on earth is going on?' you know. It's a frightening thing.

People talked about hearing different types of voices with different personalities and genders. Some thought they heard their own inner voice, others thought it was the voice of someone else - for example their mother's voice, or the voice of God. Some people thought that the television or radio was talking to them. Whilst for many hearing voices had become part of life, the experience could still be as frightening and confusing as the first time they heard them. Some people didn't realise it was unusual to hear voices (see 'Onset of mental health problems'). One woman was 14 when she started hearing voices. She was so scared she attempted suicide and developed depression; another woman found it exciting, not frightening. 

For most people, prescribed medication controlled or reduced the voices (see 'Prescribed medication for mental health problems and their side effects'). Some people who had a diagnosis of schizophrenia, however, did not hear voices.

What's it like to see things that aren't there?
People diagnosed with schizophrenia and schizo-affective disorder talked about seeing things that weren't 'really' there, including lights and shadows, people, demons and animals. One woman said letters in signs turned into messages for her. Those who had other diagnoses talked about seeing zigzags, stars, smoke, and one woman said she saw images in her mind of graves, sex and naked men, “like a film coming in your brain”.

 

Dolly knows she is becoming unwell when she starts to see shadows shaped like humans; she also...

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Dolly knows she is becoming unwell when she starts to see shadows shaped like humans; she also...

Age at interview: 36
Sex: Female
Age at diagnosis: 21
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I think the worst part is the kind of paranoia and hearing kind of negative voices. I also hear positive voices and neutral voices. Positive voices I mean as I am a writer, I do hear poetry at times and music. So those are my kind of symptoms that I have.

Can you tell me a bit more about what kind of things the voices say? 

When they are negative, they are very kind of abusive. Like they are saying, 'Oh your family don't love you. They want to kill you in fact.' 'You know you're evil, you're ugly, you know, you know, you're better off dead.' You know, 'Who cares about you?' This kind of, you know, making you feel very, very bad, you know. And the neutral ones, well the neutral just say, oh' 'You have forgotten to do this.' Or, 'The sun is really bright.' I mean it, when that happens it seems to me it is like my own kind of thinking. But it sounds like it's outside of my head. And the positive ones like I say, it can be poetry or music, or music, you know. So that's, yes the positive ones will say like, you know, 'You can anything, Dolly, do it.' You know. So that's cool. That is a nice balance to have like. But I'd prefer to be without the negative ones.

And can you describe a bit more about the things that you see?

Well that's when I am know I am beginning to come unwell. I can start to see shadows. They're not very tall, they are about three foot high and they are kind of grey, black. They have got the shape of a human being, but it's, it's totally colourless. It is just it seems like a shadow. And sometimes a shadow's like, if they are that small, they, they will start to rise and grow. And it's very hard, for example, if I am seeing that to go to sleep, because you feel like you are being watched. So when that happens it affects my sleep, which is, you know, you need your sleep. So that kind of thing just makes things worse. But when I have been very ill, I do see, what seems to be a really dark shadow, but with kind of piercing eyes as well. So that's, that's what I see.

And how does it feel to hear and see things?

I've had them such a long time, I'm used to most of them. There is still the really frightening stuff, I will never, ever be used to. It just, it's just so, so frightening, and you just want it to stop, you know. I don't know' I think I am, I am a survivor, but having said that I still prefer to go without these awful experiences. 

 

Tariq saw dead people and people following him around, but has difficulty remembering exactly...

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Tariq saw dead people and people following him around, but has difficulty remembering exactly...

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Okay and what kind of hallucinations were you having?

Well, well I can't remember must of the experience because of the medication but I used to see dead people , in graves and I used to see people, I used to actually see people who would follow me around the house and follow me when I'm out and about in the community when I'm, wherever I'm, I go they're there and I even, I remember I even recounted or record some of the descriptions of the people that I was seeing to the crisis team that was seeing me so those are some of the experiences that I do remember.

These visual hallucinations seem very real to people, and can be very frightening or distressing, affecting their sleep and other behaviour, especially if they believe the person or thing they 'see' is trying to harm them. 

 

Chapman has seen people who looked real but weren't, including someone attacking him with a knife.

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Chapman has seen people who looked real but weren't, including someone attacking him with a knife.

Age at interview: 23
Sex: Male
Age at diagnosis: 20
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I used to hallucinate, I used to see things, see people, see stuff that weren't there when I, there was this once when I, when I went back home, I looked in the window to see if there was anyone in because my window was broken because everyone used to smash my windows. So I looked in the window, I saw a group of people gathered in the, in the living room and I was scared to go in. I fought my fear and just opened the door and when I got in and looked in the living room there was no one. And there was this other once when I was hallucinating I, I saw someone trying to kill me with a knife. I put a wardrobe, put a wardrobe on the window so that he couldn't come in but I didn't know what was happening really'

Right. Well what about the things that you said you see images, what kinds of images?

' It's difficult to, well I've seen like I just told you in my living room, I've seen people who used to live on the same on streets as me and they'll be, they used to steal stuff from me. I saw an, like them in the living room and when I went in there was no one. I've seen an image of my brother and a man from the asylum team who was trying to help me out and I don't know what they were saying. But they were, I was sleeping on the ground and they were just like right in front of my face and looked so real. When I went like that there was nothing.

What's it like when, when those things happen to you?

Scary, it makes me angry but there's nothing I can do. I'd rather drink than harm someone.

Is that how it makes you feel sometimes?

Yeah.

 

Lorenz says his psychiatrist took on a "bizarre" appearance; he felt he was being spun around and...

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Lorenz says his psychiatrist took on a "bizarre" appearance; he felt he was being spun around and...

Age at interview: 50
Sex: Male
Age at diagnosis: 20
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The psychiatrist looked really scary in appearance, he could not examine me by touch. I groan deeply at him, he was an ordinary guy but his eyes seem to have, extreme protrusion and his maleness seems a threat. Bizarre looking person he was, I know he was a person. My senses misfunction and my bizarre mind was thinking, 'Oh my God, how could a person look so weird, like a beast, you know. The psychiatrist is somebody who knows about the mind and how can he look so weird?''

The last episode when I still living at home was that I felt like some force was turning me round in a circle in the room. It was literally trying to push me downstairs but the force, I know it might sound bizarre in itself but this is what seemed to have happened to me like you're on this roundabout and you're just turning and you get dizzy but the thing was I feel like there's something pulling me from inside, inside my body and pushing me towards the door to the stairs. I opened the door with my elbow, there's a flight of probably twelve stairs, steep stairs because it's old semi-detached house similar to this one I live in now very steep stairs. So when the bizarreness seemed to be pulling me and pushing me down the stairs, I had to literally sit on my bottom and go down the stairs on my bum otherwise I felt like I would've being thrown forward down the stairs.

One woman said that seeing “creepy crawlies” that weren't there was sometimes “really funny” and annoying at other times, including when she's walking, driving or reading. One man felt guilty about what he'd seen. 

 

Jay often sees "creepy-crawly things" and animals, and it can be difficult to distinguish between...

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Jay often sees "creepy-crawly things" and animals, and it can be difficult to distinguish between...

Age at interview: 42
Sex: Female
Age at diagnosis: 34
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And, and the visual hallucinations are killers. I'm really good at them now. Because I can actually say, 'The likelihood of a tiger being in my front room is extremely slim. So if I see one, it isn't there.' But a cat now can be slightly different. Because I tend to see animals and spiders and snakes and, and creepy-crawly things. Now everybody has that to a certain degree. They might, at the side of their eye they might see something crawling or they think they see something crawling. But I will see it crawling, I will look, I'll blink, I'll turn away, and it'll still be crawling. 

 But there was one particular day, it was so funny. Bless her heart, me and my daughter's sitting down, she's lying on one sofa, I'm lying on the other, watching telly. And I'm kind of watching her and I see this spider coming down over her head, this big horrible spider. And I looked and I went, 'Oh, for goodness sake, there's no bloody spider. Ignore it.' Looked again, 'Oh, go away.' And she goes to me, my daughter goes to me, 'What?' And I said to her, 'Oh, I'm seeing things again.' She goes, 'What?' I said, 'I can, there's a spider coming down on top of you.' She, 'Aargh,' she jumped up, and she ran and she's, jumped on the table. And it was real. I couldn't stop laughing, I, because I was just convinced it wasn't real, so I just ignored it. And this great big horrible hairy thing, do you know she kept it in a box for weeks? She said, 'Look, it could have crawled on me, it could have crawled on me.' [Laughs] She just kept it. It was this, but I just was convinced it wasn't there, it just wasn't there. So I go through this thing quite often, seeing things that are, are not there and coming, just coming to the times where I actually don't flinch now if I think I see something crawling because I expect it not to be there. So sometimes when it's real and it really is there, it's the second glance that I realise, 'Oh, there's something really there,' kind of thing. But sometimes it's funny, they laugh at it, sometimes it is really, really funny. And other times it's completely distressing, because you just can't sleep. And, you know, I like to sit on the floor and cross my legs and watch TV. And sometimes I'm so paranoid what might be crawling on the carpet I have to get up.

What is it like to have other kinds of hallucinations?
People also described feeling as though they were being touched, grabbed, pushed or punched by something that wasn't there [see Lorenz above].


Delusions, paranoia and disturbed thinking

What is it like to experience delusions and feelings of paranoia?
Delusions are beliefs that aren't based on reality or explained by someone's usual cultural or religious beliefs. A few people talked about having delusions including believing they were God or Jesus, that the TV or radio was talking to them or giving them special messages, believing that aliens were coming to earth, feeling as though they were being watched or followed, or having plans for world domination. One man felt people were “taking thoughts away from me”.

 

Edward experienced "delusions about world domination" and uses hindsight to distinguish between...

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Edward experienced "delusions about world domination" and uses hindsight to distinguish between...

Age at interview: 59
Sex: Male
Age at diagnosis: 20
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And I remember reading in a Beautiful Mind that John Nash Junior had these delusions about world domination which I confess I've had a little bit myself, you know, that, that somebody is trying to dominate, this is when I was much younger by the way I haven't had them lately, I couldn't care less about that sort of thing any more but I noticed that people who are in my age group now, that I was at the time I had these delusions they've actually come out and admitted to me that they've got this world domination stuff happening there. And John Nash Junior went back to Paris and did nothing because he was trying to hook up something to do with mathematics and the game theory or something in connection with world, some world conspiracy or other.

You know, I mean he had that sort of, he had that kind of scheme going on in his head by the look of it so, yeah it can happen' it can happen. and the person is not aware of it, they think that's okay, everybody knows, you know, everybody knows the CIA have bugged my toilet sort of thing. And they bug your toilet too but you're not, just have a look around and make sure will you, you know. Yeah they're surprised, they're surprised that they're deluded. That's why I'm saying, I'm careful to wait for hindsight before I decide whether anything really definitely, you know, because I am susceptible to those things but I'm aware of it. Some people aren't, you know, that's going to happen, they're waiting for that to happen.

Delusions or paranoia may sometimes have their roots in reality. One woman's belief that she was being watched turned out to be true. Another made a series of accusations about his local mental health trust and said, “They wanted to punish me for making these accusations by saying they're delusions”.

 

Dolly says it's difficult to distinguish paranoia from reality because sometimes "paranoias are...

Dolly says it's difficult to distinguish paranoia from reality because sometimes "paranoias are...

Age at interview: 36
Sex: Female
Age at diagnosis: 21
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Like I said my Dad had schizophrenia and was very paranoid. But to me his paranoia was sometimes justified because the response of these, these neighbours. So if he thought somebody was going to throw a petrol bomb through his door, it wasn't really that far fetched to me, because we, you know, we were already getting spat at and stuff like that. So I mean it's' I didn't have to travel very far from being, being where I was to being paranoid. It was a very short journey. And partly, you know, partly justified. I mean, you know, all paranoias, sometimes paranoias actually are really happening to you. For example, two years ago, the same neighbour actually, reported me to the DSS saying that I was working. So I had DSS investigators watch me. So I was, I was telling my nurse that. 'There are people watching me in a car outside.' She said, 'That is just your paranoia.' But it was actually I was proven to be right and I had to be interviewed under caution, which was actually really scary. But I was totally cleared after the investigation of what this woman was accusing me of. 

So sometimes paranoia's, it actually can be, you know, happening to you. So that is why a lot of kind of white people, you know, when you say, oh if you're a, say a black man, and you go into an all white workplace, there is, there is something underlying happening, maybe only he senses. So you can't really dismiss it as paranoia, it might have some truth. I mean it is tricky, you know, what is, you know, what is paranoid and what is really happening, you know. It gives me a headache trying to work things out really, yes [Laughs].

 

Michael says he did not experience any hallucinations or delusions but professionals accused him...

Michael says he did not experience any hallucinations or delusions but professionals accused him...

Age at interview: 49
Sex: Male
Age at diagnosis: 15
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So I mean you weren't having any hallucinations?

No.

Delusions?

Not that I'm aware of. I mean I think they could have argued that I was making accusations like I'm making accusations I guess now. And they wanted to punish me for making these accusations by saying that they're delusions. But I think, you know, that there have been criminal investigations and forensic investigations and so on and they back me up.

Right

And the proof that they back me up is that the people that I have been avoiding naming names are no longer working as doctors and psychiatrists and social workers and so on and in two cases they've been struck off.

What is it like to have disturbed thinking?
People also described experiencing disturbed thinking, including having “weird” thoughts or disorganised, “muddled” thinking. Other people described having intrusive thoughts, that is, thoughts that are involuntary and unwelcome.

 

Lorenz has unusual thoughts and "tangled" thought processes; he knows he's unwell if the...

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Lorenz has unusual thoughts and "tangled" thought processes; he knows he's unwell if the...

Age at interview: 50
Sex: Male
Age at diagnosis: 20
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My wife was pregnant and somehow I felt that I'm damaging the baby with my mental illness, as if my negative thoughts was getting into the baby and damaging it I didn't want that so I told my wife to sleep in a different room than myself. I was trying to protect the family, you see, and she understood that, in some way, it might not have made sense but she went along with it. I slept in the back room and when I get these sort of feelings like I'm, I'm hurting the baby as she was getting bigger I would squeeze my eyes tight to vanish the bad thoughts. My brain waves I believed were penetrating through the wall and get to our baby. Her tummy was getting bigger, and so, 'Oh my goodness is it going to explode or what', it's caused by my thoughts it's an awful feeling. She had a toddler already looking after. Sometimes my parents had to look after the younger one. It's just a horrendous story, I'm so happy that she stayed with me throughout this period of upheaval really'

I used to hear, when I watched television too much, take too much television news in. I used to believe they're talking to me, not only, not only television news but the programmes I actually seemed to appear this in myself in the programme. If there's black person for some reason a black man is seen as my image of myself is on the person's face as if I can see myself acting in his face. 

This is the thing what makes me think I'm ill and I am ill when, when I begin to see this you see. So I know the difference from my mental illness and when I'm not ill. Television affects me, radio affects me, oh my goodness, it's as if radio is like the commentator is talking to you as a person, as you are in the room, although it's nothing to do with your particular circumstances, he seems to know everything about you, things like that. That's something that happens for me, that's when I'm ill. And I'm aware of it and I, I immediately tell somebody. In fact last time I told my wife, 'I'm not very well,' and she responded to that and called the psychiatrist out so'

I have got what you may think are unusual thoughts, the thoughts processes still could be tangled up but'

In what way?

I have logic, I still keep my logic but your thought processes to, roll into one. It's like you're thinking something and then something will roll over into your other thoughts and then you sort of get muddled. that happens for some time as well and I was working so I wasn't all that well so I have a miller turner type work. one time I can remember at the mill, in, I had to come away from it, I was on, not this medication other medication and my thoughts just seemed like it's rolling, the thoughts seemed to be rolling in my head. And it was as if you lost concentration basically and you're sure you think something and then something else comes into your mind and it's, it's nothing about hearing things mind you this is different, it annoys yourself because you're trying to think something and it's not coming through and something else rolls over on it. So that's a weird feeling. All that is controlled now.

See 'What else helps' to find out more about how people managed their symptoms.

Last reviewed September 2018.

Last updated June 2015.

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