I'm sorry about the long delay in my blog post! I know that it has been about 4 months which isn't too great coming from someone who has epilepsy that's so uncontrollable, but I'm hoping to set a better example and make some more regular posts now!
One of the things that my neurologist has started to do is bring me down on my medication. We've started to realise that I do a lot better on less medication. It sounds a little crazy, but it's worth a try! When we told my neurologist our opinion, he agreed and then put in my next appointment letter that "with trepidation" I was being reduced on my Zonegran (one of my tablets)!
This still involves another type of medication though. It was almost like he was thinking:
"Trying to get her on LESS medication so she can reduce her seizures? That'll never work! I know - let's bring in another type of medication!"
And so he did.
This medication was called Perampanal and is a new kind of tablet and to be honest, it didn't go too well. When it comes to side-effects of medications, they don't tend to hit me too badly. But this one just emotionally destroyed me.
Basically, I really wanted to go to this primary school reunion that my friend set up, but because I wasn't able to walk round to the pub where it was set up in case I had a seizure, Mum and Dad said that I couldn't go. I was furious, to be honest. It became a bit of a shouting match! I didn't help matters when I said:
"When I was 13 and I was diagnosed with epilepsy, you both said that you'd never let it get it the way of my independence! But you are because you're not letting me socialise!"
This caused a great deal of tension within the Boulton household because I then said:
"So basically, what you're saying is 'Sorry Becky, you can't go to your reunion. The reason why? It's because you have epilepsy.' Nice."
To be honest, the stuff I was saying was really stuff that I wasn't sure if I was able to control. I wanted to stop it, but I felt like my mind was spinning round at about a hundred miles an hour and I couldn't stop it!
Soon enough, I was storming up to my room with my parents shouting at me to come back and the only thing I was screaming was
"NO! LEAVE ME ALONE!"
My stomach was churning so much with fury and I just wanted to scream because I felt so out of breath from my anger. Suddenly, I started looking around my room, the urge to start to throw things beginning to grow.
I don't think we made a hospital appointment to see my epilepsy nurse so quickly! The fact that we saw my epilepsy nurse and when I explained to her that I didn't like the Perampanal because it was making me angry, it made me feel a lot better when she said that she would have a word with my neurologist and on that same day he rang my dad and said:
"If that's what Rebecca is like on the lowest dose of Perampanal, then I think it would be better to take her off it straight away."
I felt so happy when Dad got off the phone and said that my neurologist was taking me off my Perampanal! I would never want to be on that type of medication again. Even if I was only on that tablet for a week, it's certainly a week I'd never want to repeat!
