Interview EP33

Age at interview: 27

Age at diagnosis: 26

Brief Outline:

Diagnosed with epilepsy in 2001. Has tried various drug treatments though seizures have not been controlled. Current medication' levetiracetam (Keppra) and clobazam (Frisium).

Background:

Not employed at time of interview; married 2 children.

Explains that a status epilepticus episode led to her diagnosis of epilepsy.

What I remember is waking up in hospital with all these pipes and needles all over my body, in my veins, my hand, my neck and I had a urine bag. I was thinking why am I here, what's happened. I had my mother, I don't remember all the individuals in my family who were with me but I was saying 'Why am I here?  What's happened to me?'  I didn't know what year it was, what day it was, what time it was, what age I was, I didn't 

know which stage of my life I was in. 

How long were you there? 

I don't remember exactly, my sister said, I asked her 'How did I come here? What happened to me?' She said it was the last day in my previous house, we were supposed to move out that day and it was in the morning. I went into the bathroom and it was a couple of minutes and then time passed on and I wouldn't come out. They were calling my name and I wouldn't answer. My husband he called me and called me, and then again no answer, then he just kicked the door in. They found me lying on the floor with my head on the toilet. My sister was really scared. They called the ambulance, then she said - this is what my sister told me, I don't remember this - I was taken to hospital and put in intensive care. I was in intensive care for about I don't know, was it two weeks. I don't remember exactly what she said because my memory is really bad.

Although I was in, I had all these machines stuck to me, I was having, every minute, I was having really bad attacks. They monitored my brain waves and they could see that I was having constant fits. They gave me all these various anti-epileptic medications. At first they didn't know what it was that was wrong with me. Gradually they found out. They said they thought it might be epilepsy, at first they didn't know what was wrong with me. 

So I asked him, 'Have I got, what is my condition then? Have I got epilepsy? What do you call it exactly? What is my condition?' And he said 'Well what you've got is what your condition, we call it status epilepticus because we don't know how it came about.' Because it just happened all of a sudden in my life. Throughout my childhood, my adulthood, I was fine, I had no kind of illness. There was nothing wrong with me and all of a sudden now I've got epilepsy, so they don't know how to explain it.

Explains how her condition affected both her family and her husband.

My mum's always praying that I get well and she's always stressed. Everyone, I think I've affected everyone. When I was in hospital everyone was really stressed out. They gave up eating because you know if someone close to you, like I'm a child to my parents and I'm a sister to my brothers and my sister, and they were like they gave up. My sister, she couldn't eat, she couldn't sleep and the whole family was under stress. And my husband he was really stressed out, and my older son who was six and a half, he was really, I don't know how it affected him. He was like crying all the time. And my younger one he was really attached to me before, but now he's more attached to my sister because she's been looking after him for over a year now. So he's more attached to her and my mother now.  

So how long have you been living here, because last time I phoned you were at home? 

The thing is I come here, I mostly live here because once I have an attack, a major fit, I come back to my mother's place and I stay here probably one month, two months. And then I go back and I probably stay there probably three weeks or two weeks and then I'd have this really bad fit. And then my husband, he'd send me back. And now he says to me 'I want to take you back when you're really well, when you're more in control because I don't want to see you in that kind of condition, in that state, because I can't take it, I just can't take it.' Because he can't go through the day because he keeps on thinking back to what I did when I had a fit and he can't get it out of his mind. 

Explains that an aura might develop into a tonic-clonic seizure.

But the aura is like oh my, it lasts much longer and you're aware of what's happening to you. You feel these feelings in your body. When I have an aura, it starts from the left side of my head. I feel this really burning sensation. And my mind is totally blocked out. I can't think and my ears get blocked. First of all I get this ringing and weird noise in both my ears, and then my ears get blocked out. I can't hear a single sound, word or anything. There is no trace of sound in my ears and I can't hear anything and my mind gets blocked. I can't think or utter a word. Then I get this burning sensation coming down from the top of my head to my left face. It descends down all the way to my hands and right to my toes. And I feel as if all, that part of the body is being burnt out. I start screaming but I can't hear myself screaming because I can't hear any sound. I can't say anything because I can't remember any word or anything. All I can do is just scream, and I can look around but I can't say anything. I lose sense of what's going on. I get pins and needles and I feel as if my veins are gonna pop. I feel as if my brain is gonna burst and I think this is it, I'm gonna die. I get really scared.

This is when I'm having these auras, I'm describing my auras. Then I get pins and needles. My arms and legs they start getting numb and I can't feel anything. And I think I start, try to shake my arms and my legs but I can't move them. And I can't speak either 'cause its like I don't know any language, I can't remember any word 'cause my mind doesn't work at all. And I'm just aware that I'm conscious that's all, I can look around. I don't know how long this lasts for but it lasts for a couple of minutes. And when I do, when I do have a fit, its like the sensation of these auras, it gets more and more intense and finally it gets to my head and I just black out. My relatives and people who've seen me have these attacks say I shake tremendously, my arms and legs shake. And I stretch my arms and legs out really, really hard. And they have to hold me back and I move my, I think they say I move my head and I move my eyes, roll my eyes around and do weird things. People who see me have an attack for the first time, they get really scared. And when I have a fit I just have it and I don't know, so when I have these auras I don't know whether this aura's gonna pass by or whether I'm gonna have a fit. 

Discusses the unpredictability of her seizures despite knowing her triggers.

Now I've noticed that during my period when I am more, more weak, my auras they increase and I have more auras during the day. And before, right now I'm on my period right now, but I haven't had a fit or anything. But before the previous periods that I've had, during the first day of my period I've had a fit, a major fit. And during the last day I have a fit. And in between in the month, when I'm not in my period, I have a fit as well. So its uncertain when I'll have a fit but I notice that I have these two fits when I'm in the first day of my period and on the last.

And have you noticed anything with being tired or?

Yeah I've noticed that if I'm really too tired, over-excited or I talk too much - like now! (laughs) - I talk too much, I laugh too much, I'm more likely to have an aura. But these auras they don't make me have a fit exactly.  As I said, I might have a fit at any time, it doesn't indicate like its because if I talk too much or I laugh too much or I'm. But even though, even if I take my medication on time, I'm always resting, I'm not tired, I'm not over-excited - laughing, talking, whatever - I still have, sometimes I still have the major fit. And I think to myself why have I had this fit because I haven't done anything.

So is it due to these things that I do, I don't know why I have it, you know. I just don't understand why I have it. 

Discusses her feelings of frustration whilst trying different drug treatments.

As I was saying, I don't think the medication is helping me much because although I take my medication, clobazam and Keppra that is. Initially I, what my previous neurologist left me with just having these 3000 milligrams of Keppra a day and 20 milligrams of clobazam; that's 1500 Keppra, milligrams of Keppra in the morning and in the evening; and 10 milligrams of clobazam in the morning and in the evening. And I was taking my medication on time, I was doing everything like I should and still I got this really, I still had these bad major fits. And I thought these medications aren't helping me. And then I went to the new neurologist and I told him about you know what was happening to me, and he said to me 'Do you want me to increase,' no he said 'Do you want me to give you another medication?' I said 'No, no. I've been through so many anti-epileptic medication drugs and dosages and nothing has helped, I don't want to try anything else.' 

Discusses how she lowered the dosages of her drugs herself.

And I was taking my medication on time, I was doing everything like I should and still had these bad major fits. And I thought these medications aren't helping me. And then I went to the new neurologist and he said to me 'Do you want,' and I told him about you know what was happening to me, and he said to me 'Do you want me to increase,' no he said 'Do you want me to give you another medication?' I said 'No, no. I've been through so many anti-epileptic medication drugs and dosages and nothing has helped, I don't want to try anything else.'  

Do you feel that you've had much choice in terms of the drugs that they've given you? Like now you said you've lowered the dosage haven't you? Who gave you that advice? 

No I haven't had any well relevant information about the drugs that I was taking and how it would affect me, about the side effects. I haven't had that kind of information. So what I've done now is, as I said, my dosage was 3000 of Keppra [levetiracetam] before, a day, and 20 milligrams of clobazam. Now I've lowered the dosage slowly to 1000 of Keppra in the morning and 1000 of Keppra in the evening; and 10 milligram of clobazam in the evening, I don't take 20 milligram of clobazam a day, I just take 10 milligram of clobazam. 

Each day?

At night, in the evening, before I go to sleep. 

You, you've changed this by yourself, you haven't told anyone else? 

No, I haven't told anyone else and I've noticed that since I've changed this my mind feels much less heavy and I feel much better. My body feels much better. I gained so much weight before, I feel like I'm losing weight now as well. And I think because I was taking so many drugs and so many medications, this dosage that I was taking was making me gain weight although I wasn't eating that much food. But I'm eating more food now than I did before, but I'm not gaining that much weight, instead I'm losing weight. 

Explains that she would have liked more information from doctors.

Would you prefer it if they told you why they've done the MRI scan and what it shows? 

Yeah what's going on, why am I like this and why is this medication not working and what's happening with me. It's just them, just changing the medication from one dose to another dose or from one drug to another drug, that's how it is. And they don't say 'Oh we did the scan and it showed this,' and 'it showed that' because they think oh maybe she wouldn't understand what we said to her. But I have done biology! (laughs). If they explain to me I would understand. Because if I had been given information about epilepsy and I had talked to certain individuals who have been through what I have been going through, and what I have been through, it would have been so much help to me. But I haven't had any kind of help whatsoever, or information. 

I want to know what other people go through when they have an aura and what they go through before they have a fit, and how long their fits last, how long their auras last and um, what kind of sensation and feelings, when they most likely have a fit.  And I heard that if you get fits regularly you can slow it down and you know when you're gonna have a fit. So I'd like to know how it slowly decreased and eventually if they were more in control of their life and their fits. You know how they slowly begin to control everything and made it OK, could control their life more. Because right now I can't control my life, I can't control anything. 

That's how you feel? 

That's how I feel because I have to rely on everybody, I can't do anything by myself. 

Discusses her feelings of depression, anger and loss of control.

Mostly I did feel depressed all the time but mostly during the time when I'm gonna have a fit or after I've had a fit I feel really, really depressed. And I feel like I want to die, I don't want to live any more. I cry a lot and I have lots of arguments with my husband! (laughs). I feel irritated all the time and I keep screaming and shouting at everyone, irritated. I just get irritated with anything, even with my children. And oh yeah I haven't mentioned before um, my anger, my anger has intensified more. Its more, I get angry really quickly and furious with anything. I can't control my anger now, if I get angry, now it's more under control but initially my anger was like so bad I'd do anything or just throw anything, or I'd just bang my hand. I didn't care what I did. If someone irritated me or said something or, I'd go over anything, if it was my son doing something I'd keep on shouting at him all the time and he got scared. And afterwards, after I cooled down I was back to normal. I'd think to myself oh my God why did I shout at my son like that and I'd feel really bad because I couldn't control my anger. 

Yeah, but you feel more controlled now? 

Yeah I think so! (laughs). 

Less angry? 

I feel less angry but my depression I have, there are certain periods in the month I get really depressed but its irregular, it just comes about when I feel like there's no hope for me. I'm not gonna get well and I can't do nothing with my life, I'm stuck at home. And I think all these people are doing this and that and I could have done this, I could have done that, but because of my illness I can't do anything, I'm just stuck at home. I'm an invalid you know, I just feel disabled. I'm a disabled person now, I can't do nothing with my life, that's it, I've got no future. right now I can't control my life, I can't control anything.         

That's how you feel? 

That's how I feel because I have to rely on everybody, I can't do anything by myself.

Discusses the strength she received from her faith.

And you said your faith has become stronger as well?

Yes, because my faith within my religion which is Islam, I'm a Muslim, it's become much stronger now. And my faith has given me strength to deal with my illness as well.

So do you pray more ? 

I pray more and it's helped me have a reason to live. So it's helped me. If I'm depressed, if I pray, it helps to make my depression go away. Or if I feel negative about something, my religion makes it much better, you know. It takes all the negative things out of my life and brings more positive things into it. When I pray it feels like it relieves my depression and I slowly calm down.

Yes, so if someone was going through that kind of depression, what kind of advice could you give to someone from your own experiences?

If you feel really depressed I'd ask them to pray to, well my faith is Islam, I would ask them to pray to Allah, God, because God, he controls everything and he'd answer your prayer and you'd come through this depression. And you need to think positive and not to think negative all the time because you will overcome this period in your life and it will not always be like this.