Tammy

Age at interview: 45

Brief Outline: Tammy began having complex partial epileptic seizures at 26. She developed Type 1 diabetes during pregnancy; the diabetes and epilepsy make each other worse. She is concerned about the stigma of epilepsy and the safety and effectiveness of medications.

Background: Tammy is married with two children. She gave up teaching because of epilepsy and now works as a gardener. Ethnic background: British.

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Tammy was diagnosed with epilepsy at 26 years old and is bothered about the frequency of her seizures, which occur once a week. The impact depends on what is happening at the time, e.g. if she is talking to other people as opposed to alone. Epilepsy also affects her memory. The condition meant that she had to leave teaching. Tammy points to public ignorance around epilepsy, most people associating it with ‘full-blown’ seizures. She works as a volunteer for the Epilepsy Society.

Tammy developed diabetes during her second pregnancy. She suffered from polycystic ovary problems, which she believes could have been a side effect of prescribed medication. She does not see her conditions as related, but would rather be treated by “one person” as opposed to two specialists (one for each condition). However, the 2 conditions make each other worse symptom-wise. Tiredness, a possible consequence of diabetes, can trigger seizures. But some epilepsy medication has left her feeling “sedated.” With regard to both diabetes and epilepsy, her experience was that drug treatments were initially effective but then ceased to be so. For diabetes, this has meant gradually having to inject more insulin. She is frustrated by the lack of an effective treatment for her seizures, having tried six drugs. She is considering brain surgery as the side effects of taking epilepsy medication seem to outweigh the benefits.

Tammy finds it easier to talk to people about diabetes as it’s more common and doesn’t have the stigma of epilepsy. Conditions have a big impact on her sense of self, with checking blood and injecting insulin in public toilets seen as degrading, or a form of self-harm: “It’s the conditions themselves that make me feel like a sort of down and out really, at their worst”. Managing diabetes is seen as “cumbersome” or “high maintenance” and Tammy criticises a long waiting list for a course to enable better self-management of diabetes. She is very physically fit through running, cycling, dog walking and gardening.

Tammy prefers to see female GPs, and see the same one every time if possible. She benefited from being referred to an NHS wellbeing service by her GP. Her advice for others is: “place value in what you have got and seek help for depression.”

Tammy does not mention her problems to outsiders. However, her family see a different side to her. She wonders whether it is good for her to pretend to be well in front of others.

On one level, I am really fit, you know, and able and I wouldn’t ever sort of give that up because, obviously, it’s doing me some good somewhere. My, you know, I don’t know, heart disease and things like this are all, with any luck, you know, does have some sort of stamina build-up in there. But the yeah, the drugs themselves definitely have that sort of zapping of energy and I read the side effects, which often isn’t a good thing and I know they write absolutely everything down, but the sort of muscle fatigue as well.

You know, and things like that, and I think I feel that sometimes. On the other hand I, you know, I am very busy physically and I’ve sort of made sure that, in a sort of stubborn way, you know, I won’t let the diabetes and the epilepsy stop me, you know, being what I always was really.

Sort of quite physically fit and able. I garden a lot at the moment. I went from teaching to gardening.

I know for a fact I’ve learnt to sort of play it down so much.

Right.

And again, even with the epilepsy, this is like managing it with other people, you know, I and certainly, strangers or people I’ve  met for the first time I would never openly sort of complain about, yeah, how bad I feel or didn’t I get a lot of sleep last night because of my sugar level, you know. With this gardener, for instance, I just have to, I just choose to appear really positive, you know, and I can do anything you ask me to do because I’m as strong as the next person is and so on. And I don’t think that’s healthy, in a way, sort of psychologically, you know, I play this sort of I don’t know, it developed through the years. I almost have another me, don’t, I sort of, you know, my family see me complaining and moping around and up half the night, you know. And then this other sort of side is the gung-ho same as everyone and, you know, I just feel that that’s sort of necessary in a in a in another sense. It’s a, you know, it’s another world sort of thing. So yeah, identifying the symptoms or the fatigue that’s associated with these isn’t easy but on a, you know, I deal with it as it happens, if you see what I mean.

Tammy wonders whether not seeing the same consultant for diabetes is causing problems. However, she sees specialist nurses she finds easy to approach.

So it’s a really tricky sort of area to be in, you know, and I think that’s similar with the diabetic consultant, not really, but I’ve seen one recently and I don’t tend to see the same consultant for my diabetes, which I wonder if that’s a problem. The benefit I think with the diabetic clinic, it’s at the same hospital with the neurologist, specialist nurse, diabetic specialist nurses again, they’re very approachable.

Right.

And listen and they’ve, I’ve got phone calls from them, you know, phone numbers rather, if I need to call anyone and they were very much available in the early days. And we saw my diabetic consultant recently, again a guy I’ve never met before.

Tammy is worn down by trying drugs that don’t work and have unwelcome side effects. When she was prescribed the contraceptive pill her epilepsy worsened. She links shortfalls in current treatments to lack of scientific progress.

And he prescribed something recently, which I started taking since October on top of an old drug so these combinations, and he said, you know, “It will make you sort of drowsy. In fact, you know, take it at night because it knocks you out” sort of thing. And I remember sort of like, for the first time, normally, I’d be, “Okay, okay.” You know, but I was so sort of not really reluctant but I, you know, my emotions came out and not, again, not in any sort of tearful way. I just said, “Oh my god, you know. Are you telling me I’ve got to take something else that makes me drowsy?” I said, “I ran half a marathon yesterday.” Which was true. 

It had been on the Sunday and I’d just joined a running club. I was all sort of like being, you know, poor me, kind of thing, and he and he just sat there looking at me and I quite understand that as well. I don’t expect him to say, “Oh dear, yeah, yeah, yeah.” So, you know, he’s not cold. It’s not like he was looking at his watch, you know, “Who’s next?”

But yeah that’s the difference and perhaps my GP, I don’t know what she’d have done about it either but he, you know, he’s clearly, he just wants to prescribe and let you go and try it, you know. I don’t think it’s in his interest to sort of really understand that the instant impact it has on me, but that that’s exactly what was on my mind at the time. And, you know, I’m, underneath that, I’m thinking, “It won’t work anyway. It won’t bloody work.” And it hasn’t, you know, that’s the thing. So it’s a really tricky sort of area to be in, you know, and I think that’s similar with the diabetic consultant, not really, but I’ve seen one recently and I don’t tend to see the same consultant for my diabetes, which I wonder if that’s a problem. The benefit I think with the diabetic clinic, it’s at the same hospital with the neurologist, specialist nurse, diabetic specialist nurses again, they’re very approachable.

I became pregnant but lost it actually, which again, like you say, you know, was that such a bad thing really. Then so those drugs, yeah, quite, affected me more. Either I’ve grown used to them, haven’t I, or become immune to some of the side effects or drugs have got better, sort of thing. 

I know one of the big mistakes, shall we say, which happened again sort of through these different departments that I visit, I saw a chap, I think he was like a dietician, and it was to do, it wasn’t to do with trying to get pregnant, at that stage. It was more to do with, what came up in conversation was my menstrual cycle and it wasn’t good, you know. It was very erratic and I guess I was discussing with him was this to do with my diabetes or medication and everything. Well, he suggested I went on the pill, you see, a contraceptive pill.

Right.

To regulate periods. So I did that and, funnily enough, you know, I seizured, you know. This this is almost at the point where I had to leave teaching, were worse, much worse, I did get three in one day. I remember calling it like my freak week, you know, when I just seemed to have so many all, you know, peculiar, god knows why, and, at the same time, I just think that way, no, there isn’t a reason why. However, saw my neurologist very soon after that and he, I mean he wasn’t sort of openly appalled, but he was not happy with the fact that I’d been prescribed the contraceptive pill because it is known to reduce the effects of one of the drugs I was on for epilepsy you see so.

Would you say that you’re satisfied with the care that you’re receiving at the moment?

Yeah, I think one of my big dissatisfaction at, lies is the fact that the drugs themselves aren’t working, so I can’t really point the finger at the neurologist for that but, at the same time, I am being let down. You know, my epilepsy hasn’t been controlled or managed, so who’s letting me down? I don’t know, you know, the sort of scientists who are coming up with the drugs? So there’s some sort of failure there isn’t there and again, that that is sort of beyond me. I’m doing what I’ told, taking what I’m prescribed but it’s not working. 

And the with the diabetes, I think the dissatisfaction there again, is the you know, the advice I’m given has shown not to always work and here I am, you know, left wondering is it, am I a different sort of case because of the medications I’m on, you know? It’s that same sort of question mark over the two conditions together. So no, it’s not, the root of the dissatisfaction is that I’m still affected by my conditions, you know, the epilepsy and the seizures, I don’t know. If you’d asked me twenty years ago with the first epilepsy and the drugs were working then I’d have said, no, you know, it’s fine. In fact, I would have done, I know because I’d have sort of deluded myself that everything was alright. So there’s not full satisfaction there, no, simply because, at time, the conditions, well, they are, you know, they’re part of me on a daily basis as a sort of rule, to an extent, really determine what I do. So I’m not satisfied, yeah, and that, it’s hard to say whether that’s the healthcare’s, you know, the part they play, sort of thing. I think quite possibly just not advanced enough yet are we really.

Tammy describes having a seizure during a routine health appointment. She felt she was being attacked by staff who were trying to help. On reflection, her husband said it was the worst place it could happen.

I recently, as an example, I, one of the worst seizures, you know, again, not they’re all pretty much the same level, but I happened to be in a medical centre. I was having a meeting with a specialist, no not a specialist, she was a practice nurse, and it was just my surgery up the road and we were talking about my long term conditions. We have this sort of annual review so it was just me and her, one to one, her computer was beside her and she was flicking through my notes and we must have been talking about my condition and I felt a seizure coming on, you know, there and then. And it did, it happened and I again, you know, vague as to what I know, I must have stopped talking and looked quite sort of trance like I think, you know, and suddenly she disappeared. This is all my sort of blurred memory of it and what I’ve been told since, and I do remember suddenly there were two of them sort of staring at my face, her and another female, and, you know, it’s like a dream, basically, very much like a dream. So you can see them almost, you know, strange sort of vision and see their mouths opening and sort of almost making noises, but I’m not understanding what they’re saying. 

And they could see that I think they were both saying, “No, you know, something is wrong. She’s lost it, blah blah blah.” And then they led me to the bed, which was just a hospital bed, which happened to be in the room and then, it was like I was saying to you before, there was just too much stimulus, you know, it was making, you know, my husband said it himself, you know, “That was the worst place you could have a seizure, in a medical centre.” Funnily enough, you know, so they there was this sort of panic feeling I think, although they were helping me, although I’m like a zombie, I’m not fighting it, you know. And then they rattled in this blood pressure machine thing and I remember that being so noisy, you know, “What on earth is that?” And they sort of almost like, you know, I was like a puppet. They were sort of took my blood pressure, pricked my finger, which was awful, just, you know, felt so peculiar and really unfamiliar. I’ve got no idea what’s, so, you know, feel as if I’ve been attacked almost, “Who are these people and what are they doing to me?” And but they were doing what was necessary, you know, doing a blood test. Had my sugar level been particularly low, they’d have been worried. I think I’d got a heartbeat sort of pulse peg put on my finger, you know, and so on and they were talking away as well and I again didn’t know what they were saying and so on. And a few minutes later, a doctor appeared, not my doctor, and he, I think this is this is attached to what you were saying about managing people and again sort of supressing my sort of anger towards it, he, first of all he said, “Have you taken your medication this morning, Mrs. [surname] And I go, “Yeah.” And I just, I hate that sort of assumption that, you know, you’re careless and that you’re probably not taking your tablets. 

Tammy is frustrated that she has not found an anti-epileptic medicine that works for her. She wonders whether her other conditions or a lack of progress in science are responsible.

And it’s, you know, the frustration I’ve been through with all the different sorts of tablets and I’ve kind of, you know, had faith in them from time to time and then they’re just they’re just not working. You know, I’ve gathered, after about six different range of epileptic drug, you know, if none of them work, you’re probably never going to find one that does, you know, and on my bad days, you know, when I think [sighs] epilepsy, I would have brain surgery on it, you know, which is on offer. I mean there is that as another.

Right.

Possibility. Yeah, and I again, you know, I swing from that. I do think, “Yep, anything.” You know, to thinking, “Oh, I don’t know.” I don’t, I have talked to my consultant about it and he said, “Yes, you know, that is an option.” But there’s dangers involved in that, you know. You can cause more damage, certainly to your memory after brain surgery and I think possibly, you know, the diabetes would play a part in that with any sort of operation and also I think the fact is mine isn’t as bad as some people who do have to have surgery, you know. 

I think one of my big dissatisfaction at, lies is the fact that the drugs themselves aren’t working, so I can’t really point the finger at the neurologist for that but, at the same time, I am being let down. You know, my epilepsy hasn’t been controlled or managed, so who’s letting me down? I don’t know, you know, the sort of scientists who are coming up with the drugs? So there’s some sort of failure there isn’t there and again, that that is sort of beyond me. I’m doing what I’ told, taking what I’m prescribed but it’s not working. 

And the with the diabetes, I think the dissatisfaction there again, is the you know, the advice I’m given has shown not to always work and here I am, you know, left wondering is it, am I a different sort of case because of the medications I’m on, you know? It’s that same sort of question mark over the two conditions together. So no, it’s not, the root of the dissatisfaction is that I’m still affected by my conditions, you know, the epilepsy and the seizures, I don’t know. If you’d asked me twenty years ago with the first epilepsy and the drugs were working then I’d have said, no, you know, it’s fine. In fact, I would have done, I know because I’d have sort of deluded myself that everything was alright. So there’s not full satisfaction there, no, simply because, at time, the conditions, well, they are, you know, they’re part of me on a daily basis as a sort of rule, to an extent, really determine what I do. So I’m not satisfied, yeah, and that, it’s hard to say whether that’s the healthcare’s, you know, the part they play, sort of thing. I think quite possibly just not advanced enough yet are we really.

Tammy has been taking epilepsy medication for nearly 20 years and wonders what difference it would make if she stopped taking her medication, as mostly it doesn’t seem to be effective.

The side effects of all these cross drugs, yeah aren’t sort of connected, at least they weren’t then and again, you know, I suppose I feel disappointed in that or wished I’d looked it up and known more, you know, that kind of thing. But yeah, that’s the side effects. I have been on anti-epileptic drugs for so long, you know, I should imagine it would be really weird not to be on them and the theory is, I’d have more seizures. But I sometimes I wonder, you know, I do think, “Gosh, just to come off them all and remain the same, see what happens.” But that’s not necessarily a good idea. I was always kind of warned that my seizures could turn into, you know, general seizures so that’s always been a sort of a deterrent for me to come off…

Right.

…medication but I don’t know, you know. When it’s at its worst, I sort of think or, you know, I’m prescribed a new drug that doesn’t work, then I’ve had it. I want to get rid of all of them then but I don’t and I haven’t got that far yet.

Tammy feels that GPs don’t know enough about epilepsy and wishes that consultants would look at the whole picture of what’s going on with her.

Yeah, I mean I’m sort of separating the two, you know. There’s the consultant, the specialist and my GP. I’d like to say to the sort of GP level that they need to learn more about epilepsy, certainly the chap I met who didn’t, you know, in my mind, almost didn’t seem to know what he was talking about and he probably didn’t, you know. That’s the truth. But again, he was just taking almost precautionary measures. Yeah, definitely, to and, you know, it’s funny when you weigh up what a GP is but I think there’s a, in my experience, there’s been a big gap of their knowledge with the epilepsy in particular.

Right.

That seems to be quite you know, not ignored exactly but not understood, you know, for all that it involves. And for my consultants, I think I’d say, you know, could they find time to consider the whole picture of what’s going alongside something else. I think one day, maybe in the future, you know, you would have one consultant who was just driven to maintain your sort of well-being, you know, the whole of you and that’s definitely not the way it’s run at the moment. We we’re on a different sort of process aren’t we, altogether, appointments, you know, see the person who’s considered the specialist. They give advice, prescribe something and off you go, you know.