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Neurologist needs to change something.

(4 Posts)
rainbowslollipops Sat 25-May-13 20:53:42

I've had epilepsy since I fell pg with dd 6 yrs ago. I can't go a year on meds without having a fit. It knocks me out for days afterwards & I've now got to be careful at work in case I have one whilst holding a resident etc. I've been on the same meds for 6 yrs, all my gp has done it up the dose once. It clearly hasn't worked as my last seizure was Tuesday. I'm going to see my neurologist in July & he seems to have the same answer every time. "let's see how you go" then I wait another year to see him again. I get very angry about it because I know it can be controlled so why is nothing being changed to control it?!

gingeroots Sun 26-May-13 10:13:12

That sounds c**p rainbow and unacceptable.

I wish I knew what to suggest other than making the biggest fuss you're capable of at appointment in July .

Does consultant think controlled = minimise attacks rather than no attacks .

It sounds like you need some specialist support ,is there a specialist clinic or nurse who could advise you ? someone knowledgeable to come to appointment with you ?

I'm sorry not to be more help ,I don't have experience in this area .
Maybe repost with cotrolling epilespy in title ?

Good luck to you .

rainbowslollipops Sun 26-May-13 10:15:01

I don't usually make a fuss just sort of nod and agree but this time I really think I've had enough. There must be something out of all the drugs out there for me to try. He always says its trial and error, well if it's trial and error why am I not trialling other drugs.

awaywego1 Sun 26-May-13 10:19:08

You will have to be assertive I think-just say 'I'm not happy with the control of my seizures and I would like to try something else' repeat of necessary. This your health and your treatment-take someone with you who can support you too.
Hope it stabilises soon smile

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