In brief..... Worst ever

Feeling down down down diddy down.
Had the worst seizure of my seizure career so far yesterday!

It was like a tonic clonic but with awareness and feelings of what was happening to me.
I had convulsion's in the whole of my body, I usually only experience these on my right hand side. Lost visual awareness (which I normally have throughout) but I could still feel & hear everything that was happening to me. It felt like I was chocking and I couldn't breath. Scary as fuck. Fucking horrible. 
I couldn't move any part of my body for a good 10 mins after my seizure. I just had to lay there and cry!!!
In the end it took me about an hour & a half to recover from this one.
 
I feel like I've been beaten up today. Like I've been kicked in the back and punched in the head.

Louise

The best thing about having a sister is that I always have a friend...... A best friend

Quote of the day

A sister can be seen as someone who is both ourselves and very much not ourselves - a special kind of double.
-- Toni Morrison

Invincible me!

Totally off of Epilim now. Feel so so sooooo much better. I'd got so used to the feeling of tiredness & fatigue that it had become the norm for me. Even after 3 days of being off of Epilim I feel like a new person, more energy and more brain power.......I'm invincible.... haaaaa ha la la heee he.

I'm going to be starting Lacosamide once my Phenytoin is at a therapeutic level and I've come off Lamotrigine. Lacosamide (Drug no 11 for me) I should be on that in about 8 weeks time if nothing goes tits up along the way!!! eg with the other drugs, seizures & side effects.
I'm under no illusion it will "cure" me but hopefully it will give me a bit more stability with my seizures. I'm not letting this big pile of shitness take over or dictate my life any more. After my radiotherapy treatment and coming out the other side of it all now, I'm like "well that big pile of shit didn't work on my seizures. So fuck it lets get on with life, seizures or not" and as I said to a friend who understands, you need to be brave just to stop you being too scared to live. Not letting the fear win.
Simples!!!!....................and the battle continues.

Hair update

3 months after Treatment

Not even a tickle!!

Had scan results. 50/50 It would make any difference and shrink it a little. I was in the shit 50%. Scan showed it to be exactly the same! the radiotherapy didn't even tickle it.
I wasn't surprised, because my seizures had got worse & my seizures always tell a story of sorts!
I'm coming off of Epilim as well which doesn't help. I'm still on Lamotrigine & Phenytoin.
Seeing consultant next week to discuss next step, if there is one!!!!!
Oh well, at least we tried. At least we know.

I don't regret our decision to go a head with treatment, I am just regretful I missed & continue to miss time with Jamie because of treatment appointments and due to tiredness and fatigue. I am not able to do so much with him either due to having a body like an old woman (well my tits aren't quite on my belly button just yet) but just the slow, tired thing that happens with fatigue.

I'm depressing myself now writing this post. Just wanted to do a quick update.