Wednesday 17 October 2012

London Hospital Appointment ~ not much to report

So we had my epilepsy review today in London.  Not much to report really. Since having Riley I've only had 1 very small focal seizure.  So we've decided to keep my medication the same for now.  She thinks that it's not worth increasing the Lamotrigine dose anymore so 450mg is my max dose.  Anymore big seizures and the plan would be to start a new medication. We may review it in a few months as the focal seizure could suggest I'm still at risk of a major one.

It's hard as at the moment while I worry about having a big seizure it's been over a year now since my last one so I sort of feel maybe the Lamotrigine is working... a new medication might not work at all, before I started meds I was having 1 a month... I don't want to put Riley at risk.

Epilepsy is such an unpredictable condition, that's the worst bit and not having a warning or trigger for a seizure means I never feel confident I won't have one.  I don't think a day goes by when I don't worry that if I have a seizure right now Riley could get really hurt, I have so many thoughts of what if...

I also mentioned my low vitamin D to the doctor, through my Mum I'm in touch with a professor in vitamin D research so I'm waiting for her to e-mail me back, I've asked her so many questions, that I've wanted to ask for so long but GPs have always just said go in the sun more.  My epilepsy specialist was really interested in knowing what this lady says to me as she admitted they are not sure exactly what levels etc are of concern.  You always know a good doctor when they can admit when they don't know something.  So watch this space...

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