Katherine - Interview 02

Age at interview: 22

Age at diagnosis: 15

Brief Outline: Katherine started having seizures at the age of 15 but was conclusively diagnosed with epilepsy at 20. She is on 20ml phenytoin three times and 5 ml Keppra (levetiracetam) twice a day. She has about one seizure a month.

Background: Katherine is 22 and a part-time nursery nurse. She is single and lives at home with her parents. Ethnic background / nationality' White British.

More about me...

Katherine is 22 and a part-time nursery nurse. Her seizures started at the age of 15; before this she had been getting severe headaches with sickness and also loosing sensation in her arm. Getting her diagnosis took a long time as the hospital lost her results.

Katherine feels a bit angry for the delay in diagnosis as she could have been on right medication a lot earlier. She was also told that she was 'faking' the seizures and that her seizures were psychological rather than physiological. Finally, at the age of 20, she got the conclusive diagnosis of temporal lobe epilepsy - which was a relief. Her epilepsy is thought to be caused either by a benign brain cyst, or by a fall just before she started having seizures. She is now on two medications which she takes in syrup form' 20ml phenytoin three times, and 5 ml levetiracetam twice a day and has no side effects. She has about one seizure a month which she finds that very distressing. Over the years, Katherine has had to spend a lot of time in hospital which has made her worried and anxious.

Katherine says all along she's wanted more information about her epilepsy, its causes and future options. She has done her own research in the library and on the Epilepsy Action website. Her family and friends have been very supportive, as well as her work place, where people have a good knowledge about epilepsy. Katherine worries though whether having epilepsy could affect her getting full-time employment. She doesn't want to go clubbing at the moment as she has experienced seizures when going out. She was also upset when she had to stop horse-riding which she loved. She enjoys the cinema and swimming and says epilepsy hasn't changed they way she sees herself.

Katherine's test results were 'misplaced' and she had to wait for a year to get them. She put a...

Do you remember how you felt in the time when diagnosis was unclear?

A bit anxious about what was happening. Then turned 16 and got referred to the adult neurologist, so they arranged for me to have the EEG, for the fits. But they unfortunately lost the results, took them a year to find it.

So how did that happen?

They said they mislaid the results. So we kept on at them and put complaints in, eventually a year later got told I had epilepsy. So it could have been stopped a lot earlier.

How do you feel about that?

A bit angry. That they could have been, I could have been on medication a lot earlier. I think I put a complaint in. Now we've got a full apology.

Katherine started getting severe headaches, being sick and losing feeling in her arm.

It all began when I started getting really bad like headaches and then I started getting sick with them, then one night I lost all feeling down my arm, that was when I was about 15. And they rushed me to the hospital, and they diagnosed a brain cyst, and then shortly after that I started having seizures. Then, this kept continuing so I went back to the doctors and then eventually I had an EEG but they lost the results, so it eventually took a year the diagnosis, 'cos they lost the results. And then after I've been having a lot of problems like with hospitals, doctors, one minute I'm faking them, then I'm not, but now they have said it is epilepsy now, so. 

Going back to those early symptoms, what were the headaches and being sick, what was that like? How much do you remember? 

Really bad pressure in my head. And just felt really tired all the time. And I kept having to come over from school. And I lost all feeling down my left arm, which I still get today.

And did it happen all the time? 

Every day, started every day.
 

Katherine has had both positive and negative experiences at hospital and dealing with the staff.

When you said you'd been in hospital a lot, what are your experiences of hospital, ward treatment?

Uhm, sometimes a lot better than others. There was one time when the doctor refused to see me at all, because he said I was faking it so he refused to see me at all. That was a couple of months ago.

What happened?

He discharged me. Had another one on the way home, so again he refused to see me when I got taken back, discharged again, and then I eventually got an appointment to see the consultant, said it was epilepsy. So then I saw the epilepsy nurse.

And what about other bad experiences in hospital?

Well after I've had a fit, came round, one of the times a nurse was holding me down saying, 'Stop doing that.' Can't remember a lot about that.

What about good experiences?

At times they've really looked after me. Made sure I'm okay and everything, one of the nurses even came and sat with me and then talked to me for about half an hour, she had a long chat with me about college.