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Aged under 30
Interview EP24  

Interview EP24

Age at Interview: 28
Sex: Female
Age at Diagnosis: 19
Background: Project manager; married, no children.
Brief outline:Diagnosed with epilepsy in 1993. Has tried various different drug treatments, and has been seizure free for a year. Current medication: vigabatrin (Sabril), lamotrigine (Lamictal) and levetiracetam (Keppra).


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Female
Discusses making treatment choices and being involved in making decisions with doctors.

 



My main concern was that I wanted to get off the Vigabatrin because the other thing, when I went to see the GP to get some prescriptions, he said 'What drugs are you taking?' I told him and I said Vigabatrin,' and he looked at me and said: 'Oh God, are you sure you want to be taking that?' I think that was astonishing. I mean who says that to somebody? 

And yeah we just talked through what I wanted to do and what was concerning me and you know I wanted to get off the Sabril and I wanted to either you know get - my dream would be to get on to one drug: monotherapy. That would be fantastic.  Because if you want to have children you've got less risk of birth defects or anything like that. And I think its just, you don't want to be on a cocktail, if I could get on to one drug that would be super. 

…And I, you know I would say to anyone who is dealing with doctors is just know as much as you possibly can, learn as much as you possibly can, learn as much jargon as you can, learn about your drugs as much as you can and go in there and, in an appointment, be an equal with the doctor and work with them to manage your condition. And don't just allow them to talk at you, know what they're talking about. Question them rigorously on why they're choosing to do what they're choosing to do and just be, yeah be a thinking patient. I didn't start out like that, I started out just as a little you know 19 year old person who didn't know what was going on, and now I'll make them tell me exactly why they're doing what they're doing. 
Jonathan Miller - Epilepsy
Epilepsy
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