Messages for others about transient ischaemic attack (TIA)

The people we interviewed wanted to pass on what they had learned from their experiences to other people. One of the key things that came out of the interviews was that many people hadn’t recognised their symptoms as being those of TIA or minor stroke and so may not have got help as quickly as they might have done (see ‘Symptoms‘, ‘Seeking help – routes to care‘ and ‘Delay in seeking help‘).

The overwhelming message that people wanted to pass on to others was to go to the GP, call an ambulance or go straight to the emergency department if you don’t feel right and not to ignore symptoms. Rosemary’s advice was that it’s best to call for help if you don’t know what’s wrong, and not to panic. Her husband Brian (Interview 08), who had worked in the ambulance service for many years said ‘paramedics would prefer to come out on a call where eventually they were not required, than not be called and something serious happen, which could have been prevented.‘

Angus says that if you are experiencing symptoms and dont quite know whats wrong go to the GP…

Age at interview 61

Gender Male

Age at diagnosis 60

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Well, if someone’s experiencing one, the first thing is to identify it, and not to ignore it and think it’s something else If it, if something goes wrong with your body and you’re not sure what it is, it could be a TIA. It may be nothing, but it’s worth getting to see someone sooner rather than later to talk about it, to discuss it, because the doctors, they see it all the time and they can probably recognise it for what it is. And the tests are non-intrusive, what you have, apart from blood pressure – blood tests, taking blood. it’s nothing sort of untoward, what you have to do, and they’re all painless, is what I’m trying to say, and they’re readily available. So it’s really identifying that it is and not ignoring it, because to ignore it could make it turn into something worse, you know, yes.

But I think the main thing is to identify that you have actually had a TIA, quickly I mean. And not ignore it. Because like all the doctors I’ve spoken to, all the doctors have said a lot of people ignore them because they come and go, and you think, Oh, it’s nothing, a little blip sort of thing , you know, something I’ve eaten mayb, you know, but not to ignore them. If they’re, if you lose your speech it’s not something you’ve eaten, it’s not because you’ve had too much to drink. Because you don’t lose you’re speech, you know, so there is a problem there so you, you know, and the same with your eyesight. Unless you’ve actually had an accident of some description and your eyesight just goes, there is a problem, you know so you need to sort it out, you know.

Did you have any of the numbness or anything?

No, not at all, nothing. That was it. Yeah, I was asked various questions by the doctors about different things, different parts of my body, you know, feet, fingers, toes, all that. Nothing, no. No weakness in my arms, legs, no.

So it’s quite unpredictable, isn’t it?

Yeah, yeah. And like I say, other people, the doctors have said, hearing goes, other things don’t work, you know, like I say fingers and toes. There’s always a reason, and it could just be these, could be a TIA. Best checking it out quickly, because as in my case, check it out reasonably quickly and it can be treated, and hopefully it will stay away and that will be that.

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Yvonne says call an ambulance if you see somebody experiencing symptoms that you arent sure about

Age at interview 54

Gender Female

Age at diagnosis 54

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I think people need to be more aware that is such a thing as a minor stroke and a TIA and the symptoms are not as severe. But if you know somebody and they are looking any way not their normal self or, you know, maybe reacting differently, not speaking properly kind of, stuff like that. It should raise alarm bells and maybe you should be thinking, Well maybe I ought to call an ambulance

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Denniss advice is to see the GP even if you think your symptoms are trivial

Age at interview 83

Gender Male

Age at diagnosis 82

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Well, with hindsight, because one – and I wouldn’t be alone, who doesn’t really like to bother doctors unless absolutely necessary – if you have something out of the ordinary it’s clearly advisable to do just that. You think at the time that it’s a passing thing, which is going to be hard to pin down, and, as I mentioned, I mentioned the eye problem to my optician who hadn’t suggested that it was anything of that nature to worry about. But there’s also the possibility that it might be, so it obviously could be helpful. But clearly, once I told my GP of the nature of the problem that I’d had he knew immediately what the problem was, and put things into action, so the advice obviously is see your doctor.

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Some of the symptoms of TIA or minor stroke such as speech problems, disorientation and dizziness can make it difficult for people to communicate well with the medical staff during their assessment or treatment.

Looking back several people realised that they hadn’t asked the doctor about things they were unsure about, and their advice was that it was important to ask questions, or have somebody with you who would remember what had been said later on. One woman said she found it helpful to take a small digital recorder to the consultation so that she could listen again to what the consultant had told her later on. A few people found that it was difficult to get doctors to listen to them and sometimes symptoms were misdiagnosed. Their advice to others was to keep pressing for a diagnosis.

Looking back several people felt that they had experienced symptoms that they had ignored or not realised were significant during the time before their TIA or minor stroke occurred, and that it could be useful to keep a diary and write down anything unusual that happened so that you could tell the doctor about them.

Clare says trust your instincts and keep a note of any unusual symptoms that you arent sure about

Age at interview 50

Gender Female

Age at diagnosis 48

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Trust your instincts.

Trust your instincts. If you’re not happy with some, something, trust it, you know, do something about it. I look back now and wish when I’d had these minor episodes that I’d had gone to the doctor and sort of said, you know. So, sort of, trusting your instincts or the
That’s an interesting point that you raised about those little episodes because I think, you know, I’ve heard people say that it just seemed a bit trivial, they didn’t really realise that

That’s right.

So are you saying actually it doesn’t matter how small it is if you’ve got a, a concern that

Well, I think the best thing to do, if you have several incidents like that is to write them down because then you’ll find that people say, Well when did this happen Well I couldn’t say, it was all on guesswork.

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Michelle says you need to be persistent and make sure that you get the doctor to take you seriously

Age at interview 28

Gender Female

Age at diagnosis 26

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For your own personal independence you have to keep fighting for it. If you know there’s something wrong you have to keep going and telling them that something’s wrong until they fix it. And if they don’t fix it and something does, does happen you still have to keep fighting then to get things back to the way they used to be and you can’t just give up.

So be persistent in making sure that you get the help that you need?

Yeah.

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The people we interviewed had lots of advice to offer about how to cope after having a TIA or minor stroke. Although it can feel very upsetting at the time, most people said that things got back to normal gradually. Although being told not to drive for four to six weeks was difficult for some people most people managed to work out ways round it. Over time people got used to taking the medication they were prescribed, and to making the kind of lifestyle changes that would reduce their risk of any further episodes.

David said remember theres light at the end of the tunnel, things do get back to normal

Age at interview 67

Gender Male

Age at diagnosis 67

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Well, I think anyone at risk should get as much help medically as they can. And if they are doing things like I mentioned before – smoking, overeating, greasy foods, drinking lots of beer, although all those are quite pleasant at the time, believe me having a stroke isn’t. And to anyone who’s had a stroke, there is light at the end of the tunnel. At times when you first, when you’re at the beginning of the tunnel, you can’t see the light. I think, you know it, you, you begin to wonder if there is light at the end of the tunnel, but yes there is. Things coming back to normal. I found myself laughing out loud yesterday about a letter in the paper and I haven’t laughed out loud like that for quite a long time. In fact Shirley came in from the kitchen to see what was going on [laughs]. And when I read it we both had a darn good laugh. But it does get better. And I think as long as you can try and take care of yourself, hopefully you can live to a ripe old age.

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Adrians advice is to adopt a healthier lifestyle and make sure you do what you need to do…

Age at interview 53

Gender Male

Age at diagnosis 53

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Those people at risk I would take a long hard look at your lifestyle. Cut out cigarettes. More exercise. Eat healthily. Watch the alcohol intake. And those people who have already had the TIA – it would be the same actually. To try and prevent another one.

I’m not going to worry about it. I’m not, I don’t wake up every morning worrying that I might have another one, but it certainly has focused, I’m more focused now on what’s going to keep me alive and I’m more focused on the important things in life. it’s almost like a spiritual experience I suppose. It does awaken quite a lot.

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John now knows how important it is to seek medical help as soon as possible, and that you shouldn…

Age at interview 59

Gender Male

Age at diagnosis 58

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The other thing I’ve learnt is that if you experience symptoms, don’t delay. Just get on the phone, 999, do something. don’t delay. And certainly I would never drive again. That was, that was a big wake-up call, not realising how serious things were. So a lot of learnings from that.

I do want to tell everybody that the underlying cause in my case, I’m told, is blood pressure. And for the two to three years leading up to this incident in visits to the GP – and I take medicals to work offshore – medics have been saying, Oh, your blood pressure is at the top end of normal. We ought to be thinking about doing something And I’ve never been told, You are at risk, at real risk. You should take medication now. I’ll prescribe you medication today That’s never happened. So the message that I now pass on to people I involve in conversation about this is, Make sure your blood pressure is way lower than the accepted norm Because what I’ve learnt, through the hospital that I’m a patient in, is that their version of normal is far lower than the average GP’s version of normal. And so the prime risk is something that we can measure and do something about. And that’s something that I wish to pass on. That’s my learning from it. Exercise. I could have exercised more. I should exercise more. I should lose weight. So the risks that the blood, the blood pressure problem is something that we can, we can all address.

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Having a TIA or minor stroke made people think about the things that were important in their lives and they spoke about a whole range of things they had done to improve their chances of a healthy future. These included slowing down and avoiding stressful situations, taking care of yourself and eating healthily, learning more about blood pressure and controlling it, following medical advice and ensuring you take the medication prescribed, and to stay positive and enjoy life.

Keith says be more vigilant about your lifestyle choices because although you never think…

Age at interview 58

Gender Male

Age at diagnosis 58

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A bigger message would be to, to, to tell people that, you know, if they are smoking or if they drinking too much or are overweight or overstressed that it does happen to you. Because I genuinely didn’t think it was going to be me, and I suppose if I could get that message that, that would be a

So that, is that the strongest sort of feeling that you’ve got from it really, you know, about that actually things do happen to you and it’s not other people all the time?

Partly, and it, also that it’s avoidable really, that’s the other thing. We’re not immune

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Ken feels its important to stay positive, not to worry about things and try and live a normal…

Age at interview 78

Gender Male

Age at diagnosis 74

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I think it does change the way you feel about yourself because you, you, you tend to be a little bit more wary of what you’re doing, physically. There.

So do you think it’s made you slow down a bit, or
I think so, yes. Yeah.

And think about the, just alter the pace of your life a little bit really?

Yeah.

The only thing I can do, I can say, is, is how I feel about it and OK, you had a stroke, make the best of it and get on with the rest of your life.

don’t let it hold you back?

That’s, absolutely not. Because if you worry about it too much then you’ll go down the drain.

So do you think that if you can keep yourself on an even keel that kind of aids your recovery in some way?

Absolutely. I mean, take help where you, when you need it, like from, you know, if people offer, like they do. I walk around with a walking stick people will offer, you know, if I drop something and pick it up. Well, accept it.

You know. And, or else if you don’t want to accept it, do it yourself. But, yeah, try and, you know, just live a, as normal a life as your body will let you.

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Ros says make sure you dont bottle things up, talk to someone about how youre feeling

Age at interview 69

Gender Female

Age at diagnosis 69

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I would say talk about it if you’ve got a neighbour or a friend or somebody that, you know, is quite happy to come and sit with you.

Try and talk, talk about how you’re feeling, you know. Maybe they won’t understand it but try and talk about it because if you hold it in I think it, it’s like a volcano, it will just erupt. If you’re on your own and you don’t talk about it, you go out on your own, you come back on your own, I think you need to talk to people and see people, which I, I don’t see enough people.

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Messages for health professionals

We asked the people who were interviewed what messages they would like to convey to health professionals based on their experiences. Many people were grateful...