Drugs update

List of drugs tried and tested. This is where I'm at now and I'm still on 3,6,7 & 8

1.Keppra
2.Carbamazapine
3.Lamotrigine -reduced & will reduce further
4.Oxcarbazine
5.Topiramate
6.Phenytion -reduced
7.Clobazam -reduced
8. Zonisamide -coming off it
9. Epilim -NEW

Zonisamide had horrible side effects and I was only on the lowest dose!! I was on 50mg, but consultant sad its possible to go up to 700mg!! It didn't make any impact on my seizures either.
So in process of coming off of that one.

Now I've got some of these drugs a bit out of my system and once I'm off of Zonisamide. I will be starting drug #9.
The depressing thing is, is this is basically my last hope drug!
There are 2 more, but both my consultant and my epilepsy nurse say they are pretty crap and they use them more to treat headaches, so there is not much point in trying either of them.
So Epilim is the last drug to try! if this doesn't have an impact on my seizures and has unbearable side effects, then I've gotta live with how my seizures are (I'm fucked!!!).
It's all about weighing up seizure control with side effects. Quality of life. Trying to get a livable balance between the two. All I know is I don't wanna remain or carry on as I am at the moment.

Wish I could be like one of those inspirational people that you read about in magazines and papers. To be an inspirational story, like raising awareness of brain tumours, raising money, what ever. Maybe not even those things, as wouldn't want the attention. But just being someone that can be amazing for my family. Being something other than just someone that drags their arse around feeling like shit! someone that does something other than rely on everyone and anyone. Someone that isn't a depressing cling on because I'm so lonely.
I read the headline of a story in the paper the other day '11yr old boy battles against a brain tumour and raises thousands for charity' (or something similar) only read the first bit of the story because I just felt like such a waste of space and that I can't even do anything, so didn't read the rest.
All I can do is prepare and plan for the worst and for when I die, how fucking depressing is that!
Do memory boxes for my boys and collect things etc for when I'm dead. Talking to grief support people and how to help Jamie. Planning and adapting the house for being in a wheel chair or some degree of disability as we do up the house. Talking to social services and having to sort out a team around Jamie and a social worker for me in the disability services. Talking to Lee about after I die and what I/we want with funeral stuff etc.
Some of you maybe thinking why all of this now? Well because we never know when its likely to get bad and because everything seems to have gone down hill and got so much worse so quickly over 8mnths.
Don't know if I've said before!? but my consultant has said in her career (15yrs) she has never had a patient with my illness to live longer than 6 yrs! and don't forget average life expectancy is 7.
I don't know how long I've got! so better to do it all sooner rather than later. I want my boys not to have to worry about any unnecessary stuff when I die. They will have enough to deal with.

Anyway not looking forward to starting this new drug and wasn't planning on sharing some of my depressing shit, but hey it just comes out.

I'm still here

Don't worry peeps I'm still alive!!!
Still having a shitty time of it. Bad side effects and bad seizures, so the best of both worlds!!!!
Bad headaches. I'm living off of codeine and chocolate at the moment and as much sleep as I can get. Trying hard, but haven't got much left to give. Once I've given Jamie half of what he needs (that's as much as I can) I have nothing left for anyone or anything else. Which is really making me sad at the moment.
This isn't me, this isn't what I'm about! struggling through every day.
Anyway 'Happy New Year' or at least lets really hope it is
x x