The appointment.........

The mask appointment came through they call it the "planning appointment" dun dun duuun.
It's this Friday

New drug & update

Yes another one! It's a new one, only just out this year it's called retigabine. So far it's okay.

I get really dizzy, slurry and "wonky" just after taking it, but that seems to settle down after an hour or so. The struggle to find the right words & making mistakes with what I'm saying, is there all the time. Side effects, gotta love em.
Anyway I'm on 3 again now, so hard to tell if it's just the new drug's side effects or just a side effect of the new med cocktail I'm on. Maybe once I'm on full whack of retigabine and off epilim It may be better. But that's if I can tolerate side effects to get that far.

1. Keppra
2. Carbamazapine
3. Lamotrigine
4. Oxcarbazine
5. Topiramate
6. Phenytion
7. Clobazam
8. Zonisamide
9. Epilim
10. Retigabine
    

The mask!

The latest is I'm going to have radiotherapy in the new year.
Not because there has been a progression or I've got the dreaded "c" word. It's in an attempt to control my seizures. My mdt agree that after trying 10 different aed's it's time to try something else. So thats the plan. Me & lee totally agree and we actually suggested it in the first place. We feel like we've been treading water with it all for 3 yrs. Side effects verses seizures for fucking 3 yrs now enough enough I've had a fucking enough already.
I think I've had a good go and I think thats why they are agreeing on this option for me.
The oncologist told us there is a 50/50 chance it will make any difference to my seizures. But hey it's not gonna make em worse so fuck it why not? I know it's gonna make me really ill for most of the year, but it's better than treading water for another 3yrs.
It's the mask I'm dreading at the moment and having that moulded & made for my face ready to start my treatment. I'm not claustrophobic....well I don't think I am! It's just the thought of having something over my face when I'm not sure how they will do it or how it will fit/sit. It's just the not knowing I think.
Losing bits of my hair is a whole other story.