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TIA and Minor Stroke

Talking about having a transient ischaemic attack (TIA)

The impact of having a TIA or minor stroke varied across the group of people we interviewed. Most people described experiencing feelings of shock and disbelief about what had happened to them particularly as generally with a TIA or minor stroke there is no warning and the symptoms appear ‘out of the blue’ (see ‘Emotions and feelings’ and ‘Support and information). Most people we spoke to found that life went back to normal reasonably quickly afterwards and so they didn’t feel a huge need to talk too much about it and they wanted to reassure others that they didn’t spend lots of time worrying about the future.
 
A number of people said they were fearful of hospitals and didn’t want to be admitted, or wanted to get home as soon as possible. However, despite this, some of those who were admitted to hospital found that being in a ward with other people who had had similar experiences was helpful as it provided opportunities to talk about things, although as Phillip (below) pointed out, some of the other people he was in hospital with were not as curious as he was about what was happening to them. Having friends or family visiting could also be a source of support. Phillip also pointed out that initially one might not feel like talking about what had happened but that he found it was good to have people there for you.
 

Phillip said that talking to other people on the ward gave him a sense of comradeship and he felt...

Phillip said that talking to other people on the ward gave him a sense of comradeship and he felt...

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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And I also found myself talking to the other people in the ward gave me a sense of comradeship. I didn’t feel quite so alone in the sense of where I was going, though, as I said, they were to me rather terrifying, that they were so completely not wanting to know what was happening. And here was I avidly trying to get hold of my spreadsheet and find out what my temperature was and what my pulse rate was. “What drugs are they putting in this wretched drip?” and this kind of thing.
 
And I mean I had lots of company, my family came round and clustered round. Well, actually kind of - I think they came to eat the grapes. And my wife was fabulous and supportive. And friends from London came up, very wonderful. But even though there’s everybody here, you know, in a sense you’re in your own little isolated world of, “This is, this is happening to me. It’s not happening to them.” It was a very interesting expression.
 
It’s lovely to have people come and help - and that’s another thing I would say, that if you have people who can come and be with you, it’s wonderful. At the time you really won’t want it. You’ll want them to go away so you can sit there in your own little bubble of fear and terror and concern. And, but it’s just nice to have people there. And so I was extremely lucky because people came and they were very friendly to me and very helpful.

 

 

John felt able to talk to his wife and family about how frightened he had felt and says it’s...

John felt able to talk to his wife and family about how frightened he had felt and says it’s...

Age at interview: 59
Sex: Male
Age at diagnosis: 58
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Apart from the effects on myself, the biggest effect has been on my wife and my daughter. And they are just supportive. I think the first 24 hours they were very concerned. Fortunately my wife came to the hospital with me, and at the end of the consultation I made sure that she came in to meet with the consultant so that we both heard the same message about what had happened, the cause of what had happened, and what was going to happen in the future. And because we have a fabulous relationship in which we can talk about anything, I can tell her, I was happy to tell her - not happy, that’s wrong. I was able to tell her in the first 24 hours I was frightened. I don’t mind saying that. And I’ve worked, I worked seven years underground, so I worked in mines, I know what it’s like to be frightened, and quite, it’s okay to say you’re frightened. It’s all right. And if you can tell your partner, “I’m frightened”, then they understand, to some extent. And they’re there and they, you know, I’m confident that Martine, my wife, will cope with whatever happens, because we talk about it openly. And the same for my daughter. You just say, “This is what’s happened. This is what I feel about it.” And it’s good to share that. And with, with friends.

 

Sometimes on returning home after treatment people found themselves feeling isolated and alone and for some this led to periods of depression which could be difficult to overcome without some help (see ‘Medication, treatment and surgery’ and ‘Back home’). It could be difficult to fit back into ‘normal’ life again after having this experience. Some people worried that they may have another ‘episode’ and were sometimes reluctant to go out alone for fear of being on their own if something happened (see ‘Emotions and feelings’). Few people that we interviewed said they were offered any form of counselling, but where people were finding things very difficult and counselling was offered, it was found to be very useful .Several people said that they hadn’t had an opportunity to talk about how they were feeling at the time, but that they felt it could have been helpful.
 

Ros found it difficult to control her anxiety and was referred to see a counsellor

Ros found it difficult to control her anxiety and was referred to see a counsellor

Age at interview: 69
Sex: Female
Age at diagnosis: 69
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You have to, you know, you have to make yourself strong and did make myself go out even though I was terrified of having another stroke. I made myself go out.
 
So did you feel that going out was kind of the, the way to dissipate those feelings a bit?
 
I don’t know because I was so scared but I did go and, I, all the time I was saying, “Please God, don’t let me have another stroke, don’t.” And I used to get there and come back as quickly as possible and then I was all right when I was at home.
 
But very fearful.
 
So when you said that you were seeing somebody for breathing techniques …
 
Yes I …
 
… how did you access that help?
 
That was from the doctor because I went to see the doctor, well she had to see me to do with the stroke, to see how I was getting on with the tablets, and I obviously got upset, and I knew I wasn’t suffering from depression because it, it’s a, anxiety and depression are entirely different. So she said, “I'm going to refer someone to see you from the medical team.” And she’s coming again next week, so..
 
OK. So you …
 
So I …
 
… have one session …
 
Yes, I’ve had one session for three hours…
 
Right.
 
.. I was very impressed with that.
 
And did you find it helpful, or did it seem like it might be going to be helpful?
 
Yes, I think it will be helpful. Yes, because I felt as if somebody was actually listening to me about my anxiety because it’s not really, it’s not something you can control.

 

 

Rich said that looking back he realises he never had an opportunity to talk to someone about how...

Rich said that looking back he realises he never had an opportunity to talk to someone about how...

Age at interview: 66
Sex: Male
Age at diagnosis: 62
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One of the things yeah, in actual fact it comes to mind, one of the things that never happened, I never actually sat and talked to anybody, you know, any therapist or anything like that, you know, “How do you feel, Richard?” You know, “What, what’s your problem?” “Well I, my emotions are shot to pieces.” You know. “The little things make me cry”. “My emotions come out. When I get angry and frustrated, I swear. I’m not that sort of person.”
 
So you haven’t really had the opportunity to have any help with that?
 
No.
 
Particularly. Is that something that you would like to do, or would …
 
It would have been …
 
.. do you feel might be useful?
 
.. I think it could be possibly useful for somebody who’s recently had a TIA.

 

Some people found life difficult for some while afterwards and their advice to others was that it was important not to isolate yourself, to make the effort to keep in touch with friends and family, even if you thought that they might not necessarily understand.
 

Gilly said you need to be proactive and keep communication open with friends and family even if...

Gilly said you need to be proactive and keep communication open with friends and family even if...

Age at interview: 51
Sex: Female
Age at diagnosis: 51
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Keep friends. Keep friends. Keep the channels of communication open with friends and family. If we can’t do it the way that we normally do it do it another way. I found talking on the phone very difficult. And I still do. Email. There’s Facebook. There’s Twitter. However old we are. There’s postcards. There’s letters. Meet up with people for a coffee. I’ve had to learn that I need to do that otherwise I become very isolated.
 
I’ve got to take a risk with people. I’ve got to take a risk they won’t understand and they’ll get offended. Or I’ll cry. Well I might cry, in fact it’s probably very likely I might cry, but that doesn’t matter, they’re my friends, they’re my family, they’ll understand.
 
And if they don’t, there’s nothing I can do about it. That’s their problem then and it’s not mine and I, yeah.

 

 

John feels it’s important that his work colleagues know about what has happened to him so that...

John feels it’s important that his work colleagues know about what has happened to him so that...

Age at interview: 59
Sex: Male
Age at diagnosis: 58
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I’d certainly tell them, everybody at work, they know what’s happened. And I’ve also spoken to them about what to do if I start to behave strangely, because I want, I want them to be able to feel confident to just dial 999. You know, let’s not delay. Let’s get some help. Because I’m concerned that if I have a stroke I may not be able to explain what’s happening. I want them to recognise the symptoms and deal with it. And because I travel and work in very remote locations because of my business - I’m talking about the middle of Siberian forests, or out in the Sahara, or up on the Canadian ice fields - I need to tell the people I’m with what has happened. I need to be very honest with them and say, “Right, I’ve had this. This is my concern. And this is what I want you to do about it if these things happen.” And that’s something that just feeds into a safety culture which we’ve had as a company, as a group, for all our working time, and which we’ve inherited and learnt from the major oil companies we work with, who are very concerned about individual safety and are extremely good at it.

 

 

Ros’s advice to people who have had a TIA is to talk to people about it rather than bottle up...

Ros’s advice to people who have had a TIA is to talk to people about it rather than bottle up...

Age at interview: 69
Sex: 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. Hm.
 
I think people need to be a bit more sympathetic with all stroke victims, not just mini-stroke, all stroke victims because we, we don’t know what’s happened to us.
 
And it’s just easy to say, “I’ve had a stroke” and, you know, “Oh yeah.” Nobody says, “Well, what, what is that? What happened to you?” Nobody says that. They just, “Oh yeah, hope you feel better.”
 
So does it feel like at that point there’s a bit missing, that the conversation just can’t go any further because …
 
Yes.
 
… people don’t really want to know?
 
I think so, yes. I, probably, and possibly they, they don’t understand what a stroke is anyway, so if you’ve had a stroke that’s it, oh your arm’s gone, or your leg’s gone and you lost sensation down one side. But it’s more complicated than that.

 

It could sometimes be difficult to find people to talk to who were in similar circumstances.
 

The local stroke coordinator put David in touch with a support group and although he has avoided...

The local stroke coordinator put David in touch with a support group and although he has avoided...

Age at interview: 67
Sex: Male
Age at diagnosis: 67
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I filled in a contact on the email and they sent me and she phoned me and I think, if I remember rightly, it was within a couple of days she was here to have a chat and see what she could do to help. She also put me in contact with the local stroke club. Unfortunately, as far as that’s concerned, I haven’t been able to bring myself to go yet.
 
It’s, a number of reasons but the main reason is, and it’s rather silly and I laugh at myself when I think about it, but I was frightened of seeing other people there who had had a stroke and were much worse off than I am, or been left much worse off than I am, and then it plays on my mind, “Well, is this going to happen again? And am I going to end up like that?” I do now truly want to go. I would have gone this month, it’s once a month the club, but unfortunately it, it didn’t work out for transport reasons. But I do really intend to try and go next month [chuckles] and I hope that it will help us both because my wife also needs some help because obviously she was there when it happened, it must have been catastrophic for her. And she had no information nobody, well as far as I know anyway, gave her any information. And if we were to get to that club they openly invite partners to go, partners or whatever, you know, carers. And obviously she’s going to hopefully talk to other carers or other people who’ve had strokes and be able to discuss things and, you know, sort of say, “Oh yeah, well that’s a good idea, we can, we did that and we can do that.” Or, you know, “This is what we do.”
 
I don’t find it very easy because I, if I’m talking to, well basically a stranger, well not necessarily a stranger, I tend to begin emotional. I’m amazed this afternoon that I’ve got through this without breaking down to be quite honest.

 

 

Michelle spoke to other stroke survivors via support groups on the internet, but would have liked...

Michelle spoke to other stroke survivors via support groups on the internet, but would have liked...

Age at interview: 28
Sex: Female
Age at diagnosis: 26
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The people that I’ve spoke to are just of any age. At the time I would have preferred to speak to more younger stroke survivors and I did look for young support groups which in the area where I live there isn’t any. Or not too far away, there’s not any services there either. So that was a bit difficult but at the time you just make do with you, what’s there for you.

 

 

Phillip would have liked to be able to share experiences with other research study participants.

Phillip would have liked to be able to share experiences with other research study participants.

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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I would like to be able, it would be nice to have a way where I could meet other people who’ve had this problem, and talk to them about how they’re adjusting to life and how they’re getting on, and how this kind of thing happens and what changes it’s made to them. I mean I know this is a silly thing to say, but if I have this ongoing problem and it turns out that they all have the same ongoing problem, then a problem shared in some sense is a problem minimised.
 
Or maybe this is the case because I tend not to be a group person. So, but I feel that it would be nice if sort of, you know, every three months we sort of had a jamboree when all the guys, you know, when the whole group of people in the study were invited, not part of the study but just a sort of general get-together. Or a spreadsheet with people’s names and a brief bio and people who didn’t mind being contacted to give experience. And this would be terribly important before the event. If there had been an easy way I could have contacted people who had had this event that I could go and talk to or call on the phone or exchange emails, just to get some basic experience, you know. “Fred, I understand you had a TIA, and I’ve just been diagnosed with one. And what happened and how did it turn out? And what mental process did you use to decide to have surgery, to have the operation? And what were the consequences and how did it, you know, and how did it turn out?” and kind of questions like this. It would sort of, like I said, it would be a, in a sense it’s a rehearsal for what I’m going to go through. It would prepare me a little bit for what’s going to happen. You know, you walk into the hospital for the surgery and, and there’s a terrible sense of loneliness because, you know, you just recognise now that, you know, that this is me and this is…..

 

(See also ‘Support and information’.)

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Last reviewed June 2017.
Last updated August 2013
 
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