New member: Fluff4Brains - seizures from G4 GBM

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fluff4brains

fluff4brains

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Hi folks, a big hello wave from Berkshire, UK.

I've 'acquired' epilepsy, or at least eplieptic seizures and a period of Status Epilepticus from my new brain-pal, 'Colin the Tumor', which is a Grade 4 Glioblastoma Multiforme. Colin's been mostly removed and what's left of it will be zapped an poisoned through a course of Radiation and Chemo therapy.

But I still get auras and the occasional breakthrough Simple Focal Seizure - balancing Keppra 750mg twice a day on top of Dexamethasone 2mg per day.
 
Welcome to CWE fluff - it's awesome here :)

Always nice to see another UKer on here as well.
 
Hello fluff4brains,

Welcome to CWE :) I'm a fellow brain tumor survivor, though mine's not as aggressive as yours - grade III (anaplastic) oligodendroglioma. I'm a member of a BT board, but I often find more helpful information here. Except for weakness in my right leg from two surgeries (and side-effects from chemo :P), my only symptom is seizure activity. Fortunately I haven't had any seizures since my second surgery, but I'm still on 1000mg of Keppra twice daily. I'm pretty used to it, but now and then I'll inexplicably lose my temper and wonder why, then remember "kepprage". :P

Good luck with your treatment; kick Colin's backside! It seems like you have a good attitude and have your sense of humor intact - that helps. And good luck with seizure control.
 
Thanks both - and thanks to all here. Learned a heck of a lot in a short space of time... thanks to both anecdotal and referred data. But so much more to learn! :)
 
Hey Fluff,

Sorry to hear about your Grade 4 BT, those are not good at all. Mine was a G2 Meninginoma, that was the size of a baseball. It's removal left me with seizures. Actually the way it was found was from a grand mall seizure i had, that i thought was a faint spell. I've been tumor free for almost 9 yrs now, but the seizures can be horrible, i use to get them every month, but with the meds i'm on now, i get them once every 2 months and the majority of them occur in the morning hours. I take Gabapentin daily to control my seizures and lucky i get auras, so i carry around Ativan to take as an emergency pill to stop the seizures when i feel like a seizure is coming on.

Good luck to you with your Radiation and Chemo.

:piano: :pop:
 
Thanks Zolt - woah, that was a big beastie - good to hear it's gone. But I guess we kinda share the same thought: "if it's a choice between tumour and seizures, I for one could do with the exercise". ;)

Actually that's the one big 'take-home' from just the first few days here. Lots of brave and strong folks are coping with seizures far stronger than my little dribbly ones. And I've learned that Brain Tumor folks who learn they have one from fits tend to have earlier warning of their BT needing treatment and in general it's easier to reach tumors for resection, so I'm making my peace with Epilepsy.
 
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