TIA and Minor Stroke

Medication and surgery for transient ischaemic attack (TIA)

Medication
Treatment after a TIA or minor stroke is aimed at preventing another TIA, or stroke. In addition to suggesting lifestyle changes (see ‘Lifestyle changes’) usually patients are prescribed at least one type of medication:
  • medication to reduce blockages in arteries from blood clots - antiplatelets or anticoagulants,
  • medication to lower blood pressure - antihypertensives, and
  • medication to lower cholesterol levels - statins.
Aspirin is the most common ‘antiplatelet’ medication used to prevent clots forming in arteries, and increasingly, doctors may offer an additional antiplatelet medication to increase protection from further strokes (either dipyridamole or clopidogrel). Warfarin is another common drug that is often prescribed usually where the person has an irregular heart rhythm (Atrial fibrillation), and it reduces blood clots forming in the heart which could break up and then cause reduced blood supply to a part of the brain. People taking warfarin need regular blood tests to check that the dose is right, but there are newer drugs to reduce blood clots such as dabigatran, apixaban and rivaroxaban which do not need any blood tests and they may be used more often in the future. There are a lot of different medications for reducing high blood pressure including ACE inhibitors and calcium channel-blockers, beta-blockers and thiazide diuretics. The doctor will prescribe whichever one best suits the patient’s needs and sometimes it can take a while to get the dose or prescription right. The most common drugs that are prescribed to help lower cholesterol levels are called statins, and as with drugs for blood pressure, there are several available such as atorvastatin, simvastatin and rosuvastatin.
 
Most of the people who were interviewed were prescribed various different drugs as a preventative measure and most people believed that the medication would help to reduce the risk of further stroke or TIA. The majority mentioned aspirin as being one of the primary drugs that they were prescribed, and the dosage varied according to the individual. Some people were already taking aspirin for a different reason but may have had to have the dose adjusted after the TIA or minor stroke. Many people were already taking other drugs which may or may not have had to be reviewed in line with the medication prescribed to prevent further TIA or minor stroke.

Keith had been taking aspirin because of an erratic heartbeat which was diagnosed 2 years previously, but had forgotten to take it during his holiday

Keith had been taking aspirin because of an erratic heartbeat which was diagnosed 2 years previously, but had forgotten to take it during his holiday

Age at interview: 58
Sex: Male
Age at diagnosis: 58
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I’d had atrial fibrillation for diagnosed two years ago which was an erratic heartbeat and, and for that I’d been taking aspirin and Sotolon I think it’s called. And I, it’s a possible factor that when, I’d run out of aspirin during this holiday that I’d had previously in Centre Parcs and I’d also, because of a knee injury had only just started heavy exercise.

And, and I’d put a lot into, in search round for reasons for this happening. And it may be that it was extra exercise, it may be that I’d missed the aspirin for a few days, which is, which I had and, and that obviously, that might have caused the blood clot that caused the minor stroke.

Ken was put on aspirin initially but is now replacing it with warfarin which the doctors feel will be more suitable for his condition

Ken was put on aspirin initially but is now replacing it with warfarin which the doctors feel will be more suitable for his condition

Age at interview: 68
Sex: Male
Age at diagnosis: 68
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Did he immediately say it was, he thought that it was TIAs?

 
Yeah. And put me straight on aspirin which was 300 mgs. I was on that for six weeks, [noise] and then reduced the dosage. And now as I say I’m in the hospital now for warfarin to come off the aspirin.
 
And why did you have to come off the aspirin then was it, was it disagreeing with you?
 
Well the… it’s… no.
 
Right.
 
They feel that warfarin is going to be better for me.
 
Right.
 
And stop the blood clots which I’ve got in the heart, top part of the heart, they say.
Sometimes people took the medication that had been prescribed but only had a vague idea about what it was for, whilst others found it difficult to remember the names and details of their medication. Russell (below) experienced short term memory loss after his minor stroke and so finds it useful to keep a written list and also has the details written in a neck tag so that if he’s taken ill the doctors would know what medication he is on.

Russell has a list of his medication written on a neck tag in case he is taken ill suddenly

Russell has a list of his medication written on a neck tag in case he is taken ill suddenly

Age at interview: 77
Sex: Male
Age at diagnosis: 76
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I was on medication before because I had experienced heart troubles so I was, I was on medication but it was obviously boosted up when I went into hospital, hospital with, with the stroke. And that’s continued to this day.

 
So you know what medication?
 
I do know what medication is, I can give you a list a piece of paper with them all on.
 
Right.
 
But I can’t recite it.
 
Does it include aspirin?
 
Yes, it does. It does. And I had a, when I had the blip, the mini …
 
The mini-stroke.
 
Stroke, it, that it, dose of aspirin was, was increased, quite a lot.
 
Right, OK. So from the time you had the stroke you’ve been taking aspirin ever since …?
 
Yes.
 
And…
 
Yes.
 
…blood thinners and cholesterol tablets or something, statins?
 
Well, I can hand you the list.
 
OK, right.
 
And you can, you can interpret …
 
Yeah.
 
that, that in there.
 
So, and when you say that you can hand me the list, does that mean that you kind of know what you’re taking but it’s not really that clear in your mind, about the name ….?
 
Memory.
 
...just the names.
 
I the, well that you’re, it’s the Latin, I couldn’t recite.
 
Yes.
 
Recite it off but I certainly have got it prepared and also I’ve it around my neck. That’s contained in, in, in, in the, what, if I was taken ill out that wouldn’t be my medication.

 

Ken takes several drugs now and has a general idea about what they're for

Ken takes several drugs now and has a general idea about what they're for

Age at interview: 78
Sex: Male
Age at diagnosis: 74
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I think they, well I, I think, if I can remember correctly, obviously they were giving me some medication but I don’t know what, probably aspirin and, which is what I’ve been on ever since.
 
Hmhm. OK.
 
And possibly something else and that, but aspirin and also they started me on medication, I think it was from that time for cholesterol as well. And for, what was it, for heart. Valstatins… Is another fact, is another medic, another they give me.
 
And had you been on any of those kind of meds before or is that new for you?
 
No, that’s when they started.
 
And are you aware about, you know, what the aspirin is for and why you’re taking it?
 
Well it’s, it’s basically as far as I can believe is that it aids to the flow of the blood. And simple as that. Yeah.
 
And …
 
I mean, every time, any time I scratch myself now the blood pours out.
 
Does it?
 
Yes.
 
Of course, it’s thinner.
 
It’s much thinner, you see, and the, I mean, I scratched myself the other day, I didn’t even realise it, and next thing I knew, I looked down and I’m dripping blood on the floor.

 

Geoff's wife helps him remember what medication he takes and she noticed when he seemed to be experiencing side effects

Geoff's wife helps him remember what medication he takes and she noticed when he seemed to be experiencing side effects

Age at interview: 68
Sex: Male
Age at diagnosis: 65
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So you’re on warfarin which thins the blood, doesn’t it? Are you on any other medication?

 
Enid - Oh yes.
 
Geoff -  Yes.
 
For the T, for the TIA I mean?
 
Geoff - Yes..
 
Did you just, did you get given aspirin?
 
Geoff - Well I was on aspirin but because I’m now on warfarin, I mean, I mean, they say you don’t need aspirin if you’re on warfarin.
 
And did they change it for a particular reason?
 
Enid - Just a moment. They kept you on, they said when we went about the warfarin that if he were on a small dosage of aspirin it would be all right to stay on it.
 
And then she told us that as a group, did this lady. And then she wasn’t a nurse, and then she took us in individual, she took us in individually and I asked, “Well, my husband forgets things so is it all right if I come in with him?” So she said, “Yes.” So I went in. So I said, “Now let’s get to the bottom of this aspirin.” I said, “He’s on a 75mg.” “Oh, that’ll be fine, that’ll be fine.” So he went on the warfarin. So when they said he was losing blood in his tummy they thought it was the aspirin and the warfarin that were causing it between them and the doctor rang me, when he’d had your blood test and he said, “Take him off the aspirin straight away.”
 
Right. So it was, it was having an affect on …
 
Enid - An affect on that, yeah.
 
... his health. Right.
 
Enid - OK..
 
So, you’re now on warfarin. Any other medication for the TIA side of things? Any cholesterol …
 
Enid - Yes, cholesterol …
 
Statins, is it?
 
Enid - You’re on blood pressure tablets, aren’t you? Two blood pressure tablets …
 
Geoff - Yeah,
 
Enid - And a heart tablet. Right. Well you take a tablet for your stomach. Nothing else for your, concerning your TIA.
 
And so how does, how does that make you feel? Have you, have you got any other side effects from the medications that you’ve had to take or do you generally tolerate them reasonably well?
 
Geoff - I seem to tolerate all the medication.
 
Enid - Well, the other week, a few weeks ago you said you were going dizzy when you bent down. And it was me that spotted it because I, and I said, “Are you dizzy?” He said, “Yes.” I said, “Right, the doctor’s.” So the doctor looked at his prescriptions and he said, “Well, I will take you off this straight away and put you on another one.” And he said, “I’ve been on that since I had my heart by-pass.” He said, “Yes, you probably have.” He said, “Because then in 2001 that was the gold star.” He said, “Now what I’m going to put you on now is the gold star.”
 
Ah, so they’ve updated it?
 
Enid' So they’ve altered that, yes.
Some people felt uncomfortable taking some of the medication they were prescribed because they worried about side effects. George had been prescribed blood pressure medication before he had his TIA and after reading the leaflet about possible side effects he wondered whether these tablets had caused his second TIA.

George feels that the blood pressure medication that he had been prescribed may have caused him to have a minor stroke

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George feels that the blood pressure medication that he had been prescribed may have caused him to have a minor stroke

Age at interview: 77
Sex: Male
Age at diagnosis: 71
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I would like to mention atrial fibrillation which I was diagnosed with about 1994. Every time that I’ve been given tablets for blood pressure I just collapse. It , any sort of tablets I’ve been given, I either collapse and I feel that it’s because of my heart … the, the fibrillation that’s caused me not to take these tablets.

And eventually my doctor decided the best tablet for me would be Lisinopril. I took these Lisinopril for just a few weeks. I said to the doctor at the time that on the patient’s information sheet it did say that one of the side effects is a possible stroke or heart attack. I mentioned this to her and she said don’t take any notice of that, it’s one in a million, it ,won’t affect you. But sure enough I had this stroke.

And then I think it was about … oh, I can’t quite say when it was now. I get a bit confused with the dates. But anyway I was, still having this atrial fibrillation problem. Every morning I always go for a walk for about three quarters of an hour to an hour. And I came back in home about quarter to seven, made my wife a cup of tea. Started to take it upstairs. Couldn’t get my breath. Pains in the chest. I rang the doctor’s at nine o’clock and I was seen straight away, the ECG confirmed it was atrial fibulation and I was sent from there by ambulance to the hospital. They kept me in for the day. And the doctor said there that she was going to put me on Lisinopril. I said, “You’re not.” And I told her why. She said, “I’ll put you on the 25 mg, the lowest I can give you.”
 
And within a week of having the Lisoinpril I drove from here to [local town] which is a distance of about a mile and half, but when I got out of my car. I couldn’t move my right arm. And by the time I’d walked to the bank, I couldn’t speak. I was completely - uuurr - that sort of business. And my wife drove me home. Saw the doctor straightaway. And again I was referred back to the to the hospital. And [that’s how my strokes have affected me.
 
The only medication I take now is a, is an aspirin every morning. Won’t take anything else. I have an aversion to tablets in any case, so that’s probably one of the reasons.
Several people found that they could not tolerate the medication they had been prescribed because they experienced uncomfortable side effects, and it could sometimes take a while to get the dose right, or to find an alternative drug. One of the risks from taking medication to thin the blood is that there can be uncontrolled bleeding. Ken (above) noticed that if he scratched himself he could find himself ‘dripping blood on the floor’ and Geoff (above) had to stop taking aspirin when he was found to be ’losing blood from his tummy’.

Dennis had a bad reaction to simvastatin and eventually the doctor was able to prescribe an alternative medication

Dennis had a bad reaction to simvastatin and eventually the doctor was able to prescribe an alternative medication

Age at interview: 83
Sex: Male
Age at diagnosis: 82
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The medication, you said the simvastatins you’d had some side effects with that. What, how did it affect you?

 
Oh, it affected my digestive system. Yes, I had quite bad diarrhoea. And this was happening, well, the medication was prescribed at the end of October, and towards Christmas, in December, things were starting to happen uncomfortably, and so Christmas was pretty miserable, [laughs] complicated by the fact that we had visitors at New Year who brought the Norovirus with them, so I got that on top. It was a double whammy [laughs].
 
Not nice.
 
So, no, I went back to my doctor and told him what had happened, and so - well, of course we didn’t know then that it was the simvastatins that was the problem. I had to cut them all out to eliminate the possibilities one by one. But that was the first one he eliminated. And once that was done, things quietened down. And so I was then prescribed atorvastatins.
 
And you’ll take that indefinitely, or is it time-limited?
 
I assume so. I assume I will have to take all these forever, because I haven’t been told to knock any of them off.
 
What else are you taking?
 
Aspirin. Coversyl, persantin, twice a day. And atorvastatins.
 
And no problems with any of the others? They haven’t-?
 
No.
 
No?
 
No. No.

Angus takes a number of different tablets some of which he can remember and some he can't. He had side effects from the blood pressure medication but his doctor has given him an alternative

Angus takes a number of different tablets some of which he can remember and some he can't. He had side effects from the blood pressure medication but his doctor has given him an alternative

Age at interview: 61
Sex: Male
Age at diagnosis: 60
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Well tell me what you’re taking. What are they giving you?

 Yes, there’s, I’m taking various things, simply things like from an aspirin for thinning your blood - and it’s no use asking me for names of them all! There’s about six of them and they, they’re all related to the - no one’s actually told me about cholesterol level. My cholesterol level’s quite good, I don’t know what it is, but it’s quite good, but I’m still taking simvastatins to get it even lower, because that may be a contributing factor to it as well. But yeah, I take about six different types of medicine, and two of them, one’s simvastatins for the cholesterol, aspirin for the blood, and the rest is just for lowering my blood pressure.
 
And before that you were just having the one blood pressure tablet?
 
Yes.
 
Are you still on that same one?
 
I am, but instead of two and a half milligrams it’s now ten.
 
Right. Have you had side effects from that?
 
Well I did have side effects - not from that one, I had it from one of the other tablets, when my ankles swelled up, and really did swell up, so much so that your socks sort of cut your blood supply off [laughs], because it swells your feet up that much, you know, and hard to put your shoes on. But that’s the only side effect I have had, from all the tablets, and they just changed the tablet and its fine now.
 
Yes.
 
They just changed that particular one and its fine.
Other side effects that people mentioned included stomach upsets, swelling or muscular problems, depression, feeling the cold and headaches. It could sometimes be difficult to know whether these were a result of taking the medication or not. Often it was possible to avoid the side effect by changing to another version of the same type of medication. Ros (below) felt that although drugs could be helpful, ‘that it’s up to you’ to help them work by making lifestyle changes.

Ros had been prescribed simvastatin following a major stroke, but said she didn't take it because she suffered from bad side effects

Ros had been prescribed simvastatin following a major stroke, but said she didn't take it because she suffered from bad side effects

Age at interview: 69
Sex: Female
Age at diagnosis: 69
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I was advised to take simvastatins by the consultant and because I’d had a very, a lot of side effects I didn’t take the simstatins. So maybe …

No.
 
...that was the cause of my mini-stroke.
 
Were you ever given aspirin? Or told to take aspirin?
 
I can’t take aspirin.
 
OK.
 
Yes, they did mention that and they gave it to me in the hospital and I was vomiting so they took it off me.
 
And, so then there wasn’t an alternative that they could give instead?
 
No. No.
 
Right.
 
I was on medication, I was on blood pressure tablets, a stomach tablet and something to help me with the, the stroke but they, the one that they wanted me to take I didn’t take.
 
Right.
 
So now of course [laughs]
 
What do you feel about that now then?
 
Well, maybe if I’d have taken the simvastatins, maybe it wouldn’t have happened.
 
Right. But you won’t, you don’t know that though, do you?
 
We don’t know that, no. We don’t know that. But since the first stroke I’ve lost four stone, my life is more healthy now because I think that you can’t depend on drugs, you have to help yourself, you have to do things even if you don’t want. I’m not a walker but I made myself go walking after that major stroke.
 
So when you said you lost a lot of weight after the stroke …
 
Yes.
 
... was that a deliberate attempt …
 
Yes.
 
...to ..
 
Absolutely.
 
.. change things?
 
Absolutely.
 
And was that dieting and exercise? How …
 
Yes, walking and giving up red meat biscuits, anything that I thought was bad for me I gave up.
 
And was that your own, at your own volition or did the doctors, is that what you were advised?
 
No, that’s what I did off my own bat. Because you have to help yourself. You can’t, you can’t rely on the drugs. You have to help the drugs. And at that stage I wasn’t on the simvastatin but I did everything in my power to make myself more healthy.

John has started to feel the cold more than he ever did before and assumes it's a side effect from the medication he's taking. It's hard remembering to take five different tablets a day

John has started to feel the cold more than he ever did before and assumes it's a side effect from the medication he's taking. It's hard remembering to take five different tablets a day

Age at interview: 59
Sex: Male
Age at diagnosis: 58
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Have you had side effects with the medication?

 
Small. The strangest thing that’s happened since the incident is that for the first time in my life I’ve felt the cold. I’ve led a life which has taken me to all sorts of parts of the world, and I’ve worked at extreme temperatures, and fine. And throughout this winter, which I appreciate has been cold by British terms, I’ve felt cold. And that’s really very, very strange, that’s quite disturbing. So even inside I’ve got to wear a sweater. And I’m assuming that’s medication. I can’t think of any other reason. There’s, that’s the only change that’s occurred. I sometimes feel that there’s a little bit of indigestion with, with the medication, but no - and slight change in skin. I think the skin has become dryer. But it’s minor, it’s not a problem.
 
No. And the medication. You’ve got a, an anti-hypertensive. What else have you got?
 
I, since the incident I take five different tablets a day. They are aspirin, which is blood, blood-thinning. I think there are a couple of hypertensive drugs. There’s a platelet-reducing drug, and there’s an anti-cholesterol. Yes, so it’s five tablets a day.
 
Quite a cocktail, isn’t it, to remember?
 
It is.
 
How do you remember? Do you have one of those boxes with times of day?
 
Well, I put --[laughs]. To remember to take all the medications, I keep three at the breakfast table, so that I make sure that I take the one that’s supposed to be taken before breakfast as I prepare breakfast. Two with breakfast, that’s pretty simple. So they’re always at the breakfast table. I need to take one during the day, so I carry those in a trouser pocket, which normally helps me to remember. I’m scoring about 95 per cent on that. And then the evening tablet is by my bedside table. So that - reasonably good. But because I travel a lot I need to pack tablets and a huge quantity of pills to wander around with. And that does get difficult, especially on long-haul flights and overnights and all that sort of stuff, where you’re losing track of time. And then there’s confusion of what time of day you’re supposed to take these things. But it’s minor.
 
And a different schedule as well I guess when you’re out filming?
 
Yes, yes. My schedule changes regularly, – sorry, irregularly [laughs]. No two days are the same. So it’s pretty difficult to remember to take all the pills at the right time.

Frank has had some slight swelling of his fingers and toes, and gets headaches sometimes but it's difficult to know if it's a result of the medication he's taking

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Frank has had some slight swelling of his fingers and toes, and gets headaches sometimes but it's difficult to know if it's a result of the medication he's taking

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And you’re still taking all that medication?

I’m still taking the medication, yeah.
 
Have you had any side-effects from that?
 
I don’t think so, no. I mean, I think on occasions I’ve thought maybe the toes and fingers may be slightly tight, but not much. Really, no. I get some headaches but I mean maybe that’s more closely linked to alcohol if - I just seem to get a hangover earlier, which I think I was getting some time before. So I think I’m maybe getting worse headaches with alcohol than I was. So I’ll just cut down the alcohol maybe. Which is a sensible thing to do.
 
[laughs] Yeah.
 
So maybe headaches, but I mean, they’re not too bad or anything.
Several people experienced depressive feelings after their TIA or minor stroke. Some were given anti-depressant medication, but not everyone wanted to take this type of medication.

David was prescribed anti-depressants but he didn't like the way they made him feel so he stopped taking them

David was prescribed anti-depressants but he didn't like the way they made him feel so he stopped taking them

Age at interview: 67
Sex: Male
Age at diagnosis: 67
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I worry much more than I used to. I worry more than is good for me, but I don’t know how to stop that. I, they did give me some antidepressants but they sent me into such a spin and enough.

 
What they just made you feel funny?
 
It made me, well, it was like … I mean, like I imagined you would feel if you take an overdose of cannabis or something. Things were, I mean I say imagine…literally. things were going in and out. I felt worse. And I, that was it.
 
Right.
 
I mean, I was told by the doctor, by the nurse, by the pharmacist, to be, not to be worried because they wouldn’t work for at least seven, maybe twelve, maybe fourteen days.
 
I took one and within an hour I was in a terrible state.
 
So you just, you didn’t bother with those after that?
 
I didn’t bother with any more.

Ken has felt depressed since his TIA but doesn't want to take medication for it

Ken has felt depressed since his TIA but doesn't want to take medication for it

Age at interview: 68
Sex: Male
Age at diagnosis: 68
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In terms of kind of feeling a bit low about things have you seen the doctor about that? Have you spoken to any of the medical professionals about that?
 
No. No.
 
Is that not something that you would go down that road?
 
No.
 
Is that something you’d keep …
 
Because I don’t …
 
... with, is that a …
 
I don’t …
 
... macho thing again?
 
I keep that to myself, I don’t want know what they call it? Pick me ups or anything like that.

 

Some people stopped or thought about stopping taking their medication because they weren’t happy with the side effects, or just didn’t feel comfortable taking medication on a long term basis.

Clare found that the statins gave her bad headaches so stopped taking them, and eventually the dose was adjusted by one of the doctors she saw

Clare found that the statins gave her bad headaches so stopped taking them, and eventually the dose was adjusted by one of the doctors she saw

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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I think my cholesterol was six point something which is higher than the average, it’s what they want I know, but it’s not extortionate really.

 
Did you get put on any drugs ..
 
Yes I did.
 
… anti-cholesterol?
 
Ah, yes, I got put on simvastatins. Statins. And they gave me terrible headaches.
 
And did you carry on taking the tablets or did you stop?
 
I’ve stopped.
 
Right.
 
And then the doctor went mad with me because I stopped. Because they were just giving me really bad headaches.
 
Were they able to provide you with an alternative or not?
 
The one doctor didn’t. The other doctor did. They lowered the dosage.

Phillip experimented with stopping some of his medication because of the side effects. It was difficult to find out which of the drugs was causing his symptoms

Phillip experimented with stopping some of his medication because of the side effects. It was difficult to find out which of the drugs was causing his symptoms

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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These drugs, I mean they’re magic, but they do have the most frightening side effects. You’re on statins, and you become depressed and you’re permanently fatigued, and your libido goes to the dogs, and you’re on these other drugs and they all have similar side effects, and gastric problems. I mean, it really doesn’t do to read all of this stuff.

 
And I’m on them all. And, you know, I mean I get depressed and I get completely tired. And I claim it’s because of my age, but, you know, it’s not, I don’t think it’s really. I became sufficiently worried about this that about a year ago I decided to take myself off the drugs. A self, n=1 test it’s called, where I take myself off the drugs. And I talked with my GP about this and she reckoned if I wanted to do this it was okay and she was happy to advise me about it. And she reckoned I needed to stop each drug for at least six weeks, because that’s how long for you to recover your normal condition.
 
And so progressively over the six or nine months I stopped each drug.  And I got bored with this and I dropped them two at a time and to see whether, if that showed an improvement, I could then go back and work out which one of these two was it. And the answer was kind of, interestingly the answer was indeterminate. Because one’s mood changes, the weather changes, what you’re doing changes. And so there’s so many changes in one’s normal lifestyle that to try and separate from this fact whether I’m on or off the drug, I, the results were never conclusive.
 
But certainly by the end of it - maybe it was just simply psychological, you know, you can, bootstrap is the most powerful thing of all - maybe by the end of it my symptoms were much less.

Roger isn't happy taking medication and has been thinking about alternative therapies, but he feels his doctor would not be happy if he stopped taking his tablets

Roger isn't happy taking medication and has been thinking about alternative therapies, but he feels his doctor would not be happy if he stopped taking his tablets

Age at interview: 67
Sex: Male
Age at diagnosis: 64
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And in terms of, you know, your future health and the risk of further TIAs or minor strokes, I mean what have you been told about that, how do you think about it?
 
Nothing at all really. And it seems as long as I keep taking the tablets as they say. Yes. Hm. [shrugs]
 
So your expectation is that you keeping taken your medication and things should remain stable?
 
Yes, because, I actually asked some, until things....yes. I’ve actually asked if I can stop the tablets and I think the implication is that you don’t, you know, you keep taking them. But I did wonder about it. Then I had a friend who does the alternative therapy. She seems to be very into not taking them. But she’s not pressed me on that lately so…
 
So was it her influence that led you to think about may be stopping taking your medication? Or was it your …?
 
Connected. Connected. But it was something that I’d, because I’d managed with Bendrofluazide, but seeing what happened with just the Bendrofluazide and not having other tablets. Or maybe it was just the stress kicking in.
 
Was there a side effect from that?
 
Bendrofluazide? - unsure really. I’ve had various things like rhinitis or sinusitis rhinitis generally, swallowing a bit. Just generally the rhinitis I think, the what do they do call it post nasal….
 
Blocked?
 
Yes, blocked and you feel all the time you can sort of …
 
Can’t clear your nose...?But that’s something you don’t know if that’s linked?
 
No, I don’t. Because I had a deviated septum, but I did go to sorry to the hospital, and they said they looked, and I said about an operation for a deviated septum and she said, “Well its relatively clear to be honest because of the tablets you’re taking and the risk factor and we wouldn’t, it wouldn’t be a logical step.” or whatever they …
 
So what was it that made you want to stop taking some of the medication?
 
I just felt perhaps I felt, well I feel well at times, you know, I feel if I’m carefully eating… watching my dietary considerations, exercising, perhaps I don’t need them?
 
But the medics have said keep taking the tablets?
 
They said, yes, they did yes. I mean psychologically I do wonder about it, psychologically. And I think sometimes there are other factors that work looking after you, I suppose thinking from a spiritual background...
 
Yes, I mean, that’s interesting, because some people do, you know, kind of relate to that in, when they go through an illness or something like that. Is that something that’s been….
 
Yes, for me.
 
Is that since the illness or…?
 
It’s always been that way. Always been there. And I’m not sure about the tablets. And I know the alternative therapy lady said, “It’s a shame to see you going down that road.” She said that about five years ago.
 
And is that to do with not kind of wanting to pollute your body with…
 
Yes. I think it is actually.
 
… drugs?
 
Yes, yes.
 
And what sort of alternative, have you looked into any kind of alternative therapies that you might take on?
 
Some of them yes. Then others - people say, oh they’re untested and they unproven. So, yes, I have looked. Obviously they’re not on the NHS. You have to pay for them privately or whatever, so …

What kind of things have you thought about?

Oh. I’ve heard the names of them, but usually they look to me as a small white tablet, that this particular lady has. She sometimes … she gets them from Tunbridge Wells.

Are they herbal things like that?

Yes, herbal thing, herbal homeopathic. Hm. And there’s Chinese medicine and all sorts. I’m looking into things and perhaps I’ll go along those lines.

You’re thinking about that for the future may be?

Yes, the future. Although I feel the GP service would be totally, well unhappy about it. 

And would that make you think again about it, you know, if you wanted to do something that wasn’t advised by the medical profession is that something you would take. How would you feel about that?

I feel you would have to weigh all the factors up. And also when one’s close what’s it.....partner, relative, seems to be against it. Because you have to go by, well you have to go by what you feel personally, and their experience is something that they’ve had a lot of experience perhaps in a certain field, and plus my wife is very against alternative, I think more or less alternative, because she’s worked in the mainstream medical.

So you wouldn’t necessarily rule it out?

No I wouldn’t.

Sometimes people who had been prescribed several different drugs found it could be difficult to remember to take them at the right times. (See John above).

Clare forgot to take her medication on holiday with her and was worried what might happen if she didn't take it for a few days

Clare forgot to take her medication on holiday with her and was worried what might happen if she didn't take it for a few days

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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The fact that you’re taking preventative medicines now, does that not, does that give you any confidence about the future or do you still feel quite uncertain about things?

 
Well it’s only 20, it’s, it only actually is, because when my husband and I went away for, the early part of the year on our honeymoon I’d actually forgotten all my tablets and I was, I was quite surprised at how almost aaah, panic struck that I was. “Where are my tablets?” And I phoned my consultant because he’d given me his mobile works number and explained to him and he said, “They’re 20% stop you having a stroke.”

 

Most people we interviewed were satisfied with the treatment they had received and felt relatively confident that the medication they had been prescribed was helping to reduce their risk of further stroke. However, one woman was still waiting for a definite diagnosis some months after her episode, and even though the registrar at A&E had said it was suspected to be a TIA, she wasn’t given any preventative medication.
 
Surgery
 
One of the most common causes of stroke and TIA is a blockage in one of the two large arteries that travel along the front of the neck, delivering blood and oxygen to the brain. These arteries are called the carotid arteries. Ultrasound scans are used to check whether there is a blockage which needs treatment.The main treatment options for severe blockages in the carotid artery are carotid endarterectomy, and carotid angioplasty or stenting.
 
Carotid endarterectomy is an operation to clear the blockages in an artery. The surgeon will make a small incision (cut) in the side of the neck so they can see the carotid artery, which will then be clamped shut. The surgeon will then open up the artery and remove the inner lining along with any debris. It is likely that a graft will then be sewn onto theartery to widen it - most surgeons believe this lowers the risk of a repeat stroke. A graft is a piece of tissue that may be taken from a vein in the thigh, or it may be man-made. When the surgeon is finished theartery will be stitched up, the blood supply restored, and the small cut in the neck sewn up (Stroke Association April 2012).
It is most effective when carried out within two weeks of a stroke or TIA and NICEn- National Institute for Health Care Excellence recommends surgery within 2 weeks (CG68)  “In people who have previously had a stroke or a TIA, their risk of having another stroke or TIA within the next three years is reduced by a third after surgery.” NHS choices 2017.

Carotid angioplasty is carried out under local anaesthetic. A small flexible tube is passed into the carotid artery through an artery in the groin. The tube has a small balloon at the end of it. When the tube reaches the narrowed area, the balloon is inflated. This expands the artery, allowing the blood to flow through it again. The balloon is then removed.
 
Carotid stenting involves the same procedure at first, but once the balloon is inflated, a small wire mesh cylinder called a stent is then inserted to keep the artery open, improving blood flow. The stent will stay there permanently.

Phil had an ultrasonic scan which showed that his arteries were blocked to some degree

Phil had an ultrasonic scan which showed that his arteries were blocked to some degree

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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Part of the diagnostics on the first afternoon included an ultrasonic scan. And the ultrasonic scan is a device that uses ultrasonics, very, very impressive technology, to measure the flow rate and to image the artery. And looking at the flow rate, they could see that there was some slight obstruction, it was about a 50 per cent obstruction, to my blood flow. Well, to me that’s a bit scary. That means only half the blood’s getting to the brain that should. And I think I need it all. And I wonder whether that’s a cause of some of this memory loss that people have, simply partial blockage. I’m sure this has been intensively researched. I haven’t looked into this. The thought just popped up right now. And the other part was that they could find that there was about a 40 per cent blockage on my left artery, and there was this 60 per cent furry blockage on my right artery. These furry blockages grow very quickly, and because it’s kind of furry they’re likely to be unstable and to have pieces, fragments that separate and they’re entrained in the bloodstream and into the capillaries of the brain. And so it was as a consequence of the ultrasonic scan. And in fact, looking at this now with hindsight and my picture, this is the magic diagnostic. Of course I’m only pointing at the carotid and I don’t know whether the other arteries have similar breakaways. But I wouldn’t have thought so, because - I’m not too sure on the physiology of this - but my understanding is that the carotid directly connects the heart, presumably comes off the aortic artery and then - so the only, it would either be a blockage in the aorta or - I think that’s the artery - or it would be a blockage in the carotid. So maybe all of these problems are caused by blockages in the carotid artery. And if this is the case, then to find out you just have to run this scan.

 

Phillip found it quite hard to weigh up the risk of having a second TIA against the risks of having the surgery

Phillip found it quite hard to weigh up the risk of having a second TIA against the risks of having the surgery

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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But the odds looked like, they claimed that there was about, possibly about a 3 per cent likelihood of my having a second TIA following this. Or I could have the surgery, this endarterectomy, where they cut open my carotid, carefully scrape out the clot and sew, stitch everything back up together again. And we investigated that. And the national average of having an episode during surgery or close, caused by surgery, is about 5 per cent.

 
So, however, I was at [city] and at the [hospital], and their track record is very, very much better. The very best that the nation has is about 2½ per cent, the very best surgeon. And it’s a very dubious paper, this, because I have the feeling there was some cherry-picking in that hospital and this surgeon only did the cases that he knew wouldn’t go bad. And the surgeon who was doing mine, she was about 3 per cent, which I realised was pretty outstanding for the operation. But on the other hand it was exactly the same risk as leaving the clot there and not getting any worse. This is a nightmarish decision because you really, the data you have really isn’t statistically sound enough to make a decision. But you do know that frankly you’re going to close your eyes and blindly make a random choice. And it’s terrifying. Because if you actually went into surgery and came out and you’d had another stroke, which is the most common problem, that another clot breaks out during the trauma of the surgery, or just you have a, surgery is risky under its own account, and so you suddenly find yourself frankly semi-vegetative, you’d really hate yourself for the operation. But the thought of living for the rest of my life with this sword hanging over me waiting for the chunk to break off and get caught up in my brain capillaries - so I finally decided to go with the operation. But it was with most serious misgivings.
 
So, okay, two weeks later you realise the symptoms have completely vanished now. So it’s very hard to face surgery when as far as I’m concerned I’m cured. And it’s a hard decision. And it’s really terribly important to find people who can help you with making this correct answer. I was very lucky. My wife is unbelievably supportive and we have access to all of this material.

He describes what it was like having a carotid endarterctomy operation under local anaesthetic to remove a blockage from his artery

He describes what it was like having a carotid endarterctomy operation under local anaesthetic to remove a blockage from his artery

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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But anyhow, so I had these doubts about having the surgery. And the anaesthetist was really tremendously supportive and even whilst he was prepping me for the operation he was explaining that, “If you really don’t want to go with this, you can still pull out.” And I felt that the fact that the hospital maintained this position that it was my choice till the last minute, if - that was to me a very encouraging sign that these people were really up, right up there.

The operation’s a bit peculiar and I don’t think I’ll go into the details here. But because they want to make sure that you don’t lose blood circulation to the brain, when they cut the carotid open, of course, there’s no circulation to the left side of the brain because peculiarly [pause] - to the right side of the brain, there’s no circulation to the right side of the brain, because peculiarly the right side of the brain is what operates the left hand. So far. And because they want to make sure that the right side of my brain is still functioning, they don’t actually give me an anaesthetic. I’m not unconscious. In fact they want me to talk to them, they want me to describe my condition. They keep asking me, “Who is the Prime Minister?” and “Where is the operation happening?” and “Which county are you in?” and “Would you tell us little stories.” And, well, I’d just recently had a wonderful adventure, so I told them all about this wonderful adventure. I do hope they were entertained. And it’s a bit scary because you can feel your life symptoms getting better and getting worse as these operations proceed. You know, your blood pressure varies and things like this happen, and suddenly you have this terrible feeling that you’re sinking.
 
But, but also it’s a very great advantage to have not had an anaesthetic, because as soon as you’re all out of the operating room, you’re essentially well. And within ten minutes I was sitting up and hungry, but they wouldn’t feed me, and chatting to people and, within an hour or so - my memory of the times might be wrong. Other people say I was, it seemed like I was gone forever. But as they were sitting in the ward waiting for me, wondering whether I’d come back on alive or dead, they probably felt it took a long time too. Recovery was complete. I didn’t have any symptoms before. I don’t have any symptoms after. The surgeon very carefully laid the scar in a crease in my neck, of which I’m getting too many, and so you can’t even see the scar. And so when I explain to miscellaneous doctors that I’ve had this operation and it was on the right-hand side, they look and they say, “No, no, it must have been the other side”, as if I didn’t know.

Frank was told he had a hole in the heart, which is a known risk factor for TIA. He had no idea he had a hole in his heart until this time. It is unclear how far the risk of having further TIAs is reduced by having surgery to close a hole in the heart, and Frank has decided not to have surgery.

Frank describes how he searched for evidence on the value of having surgery to close the hole in his heart, and decided not to go ahead because the evidence was unclear

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Frank describes how he searched for evidence on the value of having surgery to close the hole in his heart, and decided not to go ahead because the evidence was unclear

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And with the cardiogram, they can actually see these bubbles go through the hole in the heart, and actually when you put a pressure on more go through. So as a result of this they want to close the hole in my heart. So that was the recommendation, which I wasn’t too happy with, and so I immediately looked up some data, and the NICE [National Institute for Health and Clinical Excellence] study which comes from 2004, 2005 thinks it might be okay but the evidence isn’t fully in favour of it.

Four or five studies in the States come out pretty even whether it does any good or not. There’s lots of other studies which maybe pertain to my particular condition, which are really much in favour of me having it done. I’ve been to see the surgeon in [city] who seems very keen to do it and he’s got an incredible safety record. And I’m about to write the letter back to say that I won’t have it done, because I think my experience is as a lousy research scientist who knows his statistics, but to me the probability of really reducing the instance of recurrent strokes is very limited, if at all, with all the studies I’ve seen. So for that reason I don’t really want somebody sticking something up a vein in my leg into my heart if it’s not really needed.

 
The idea is that if this cause of the stroke was a paradoxical embolism - which means it goes from the vein across to the artery and then gets pumped to the brain - if they close it, that can’t occur. I mean the safety of the person wanting to do it is extremely high, and how efficient it is in actually doing the operation, is also extremely high, but whether it has the effect they want, I’m not clearly convinced. And certainly the evidence in the case of people who’ve had a DVT, which is fairly unusual and possibly or partly avoidable, it’s maybe not absolutely clear that you need it done in that case, is what I’ve read anyway. But of course, the papers I’ve read, well, I’m sure some of the papers are good, but if you’re dealing in a field which isn’t your own you don’t know how good the people are. But I mean, it’s a reasonable consensus, and these are papers in all the big, mainly United States cardiology journals. It might have been better to have discussed it with one of the doctors whom I’ve seen but I mean there hasn’t been that opportunity. I mean, there might be a case, but I’m fairly happy with my decision, actually, so….But I mean, maybe some of the doctors might not be. But there you go.
 
I think my elder son probably wants me to have this operation on the hole in my heart. A very good friend of his is a cardiologist and he’s very keen on me having it done too but, but so be it.
 
You’ve made you’ve made your decision, yes?
 
I think so, yeah. Well, I’m just writing the letter this morning, yeah, so. I mean these cardiologists don’t know what they’re talking about, really, when it comes down to it, you know [laughs].

The evidence review Frank describes is from the National Institute for Health and Clinical Excellence (NICE).

Last reviewed June 2017.
Last updated
June 2017.

 

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