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Interview EP20

Age at interview: 39
Age at diagnosis: 35
Brief Outline: Diagnosed with non-epileptic seizures in 1998, which were triggered by manic depression. Current drug treatment is for depression and seizures, and includes carbamazepine (Tegretol) and sodium valproate (Epilim).
Background: Independent financial examiner; single, no children.

More about me...

 

Explains that the tests he had showed that his seizures were non-epileptic.

Explains that the tests he had showed that his seizures were non-epileptic.

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Well firstly my psychiatrist's staff grade, senior registrar whatever, gave me a full, a full undertaking of all my whole body, all my reactions and everything, hammers all over funny places in my body and testing my back and testing everything. And he said that he thought it might be temporal lobe epilepsy as well. So I had a two pronged attack. I had my GP referring me for tests and things like that at a very good hospital and I had my psychiatric nurse and so on also saying well if you want we can send you to a local hospital. So I had it both ways. 

...It was really assuring that somebody was going through the right tests. So then he said "Look I don't know whether you have temporal lobe epilepsy or not but I'll tell you what I will do."  He said "I will, I will er check your EEG again and I will check your telemetry again and I'll check your MRI again."  He said "I want to look at these three things again, particularly the telemetry because," he said "there's something in the telemetry report that I'm not very happy with about certain peaks and troughs that I'm not very happy with and," he said "I want to look at that again and discuss it with somebody [hospital]. So he then said "I will refer you to a clinical psychologist at a very good hospital in London and," he said "I'll come back to you about whether I think you're temporal lobe epilepsy or not." So when I went the second time, after a proper interview and everything he said "I don't think that you are temporal lobe epilepsy." 

'So he said "I don't think that you are temporal lobe epilepsy but it's on a balance of probabilities that I say this, as with many things." He said "I think that you're having seizures that are called non-epileptic seizures." And he said "I think you could benefit from going to see a clinical psychologist." 

 

Describes what first happened when he had a non-epileptic seizure.

Describes what first happened when he had a non-epileptic seizure.

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Yes in 1995 I started having some very strange thoughts, strange thoughts about God, strange thoughts about famous people and so on and so forth, and alongside that came the, came a problem I used to have with my handwriting whilst I was in hospital. I was finding that I wasn't being able to cope with my handwriting very well, I was finding that I started repeating and repeating and repeating and started scribbling and started scribbling and started scribbling. And I didn't think much of it, I didn't think anything of it until I went to university a couple of months later and then again I would start scribbling and scribbling and scribbling and scribbling and scribbling.

For how long? 

Oh each time it would be 40 minutes to 1 hour. 

Right.

I mean if somebody would catch me they would grab the pen out of my hand and they would stop me. 

 

Discusses the tests that showed his seizures were non-epileptic.

Discusses the tests that showed his seizures were non-epileptic.

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So he said "At the same time as giving you the telemetry unit I'm going to refer you to a neuro psychiatrist." 

Right, this was the professor? 

So this was another professor, another professor, a neuro psychiatrist and we had to wait an awful long time to see him as well (laughs ).No probably not, probably 5 months. 

On the NHS? 

On the NHS yes, so when we went to see this neuro psychiatrist and he asked us, his senior staff grade asked us a lot of questions, took about an hour with. Asked us questions right from my birth, right the way through till my, right the way through till the seizures. 

Then we went to Professor, whatever his name was and he said "It sounds fascinating and it sounds like it could be temporal lobe epilepsy but on the balance of probabilities I think it probably is not temporal lobe epilepsy." So I thought he might be right but he never gave me an alternative to what it could be except he said "It's a manifestation of your manic depression." 

Right. 

It's being brought on by your manic depression. 





 

Explains that he is working on a therapeutic earnings basis.

Explains that he is working on a therapeutic earnings basis.

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I work on a therapeutic earnings basis so I only work 5, 6 hours a week. I earn a small amount of money but there is an opportunity for a job coming up. 

Yes, what's this job coming up? 

There is an opportunity of a job coming up in the same position that I'm doing now only part time or full time.  Again we have to get the funding for it obviously. 

Yes so are you thinking of doing it part time? 

I'm thinking of doing it part time, may be 21, 22 hours a week. 

Oh that's good 

24 hours a week. 

Does that mean you're feeling a bit better than you were before?  

Yes, yes I am yes. 

How are you feeling better now, can you tell me  a bit about that?    

Well when I go to work I'm able to cope with the work, I'm able to cope with the pressures, I don't take too much time off 

I do more than 6 hours a week but I only get paid for 6 hours a week. I work about 15 or 20 hours a week and I'm trying to monitor how many hours I work so that I can find out what I'm capable of.

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