qestion re; epilepsy

[sturdygirl]

Fingers crossed at the moment Paul!
Hubs has started with a good cold, so I'll let that run it's course before before I blame the meds
How's Lisa? Still improving I hope xx

[PAUL72]

about the same to be honest during this last few weeks, some very good days, most seizures continue to terminate within 20-30 seconds which is brilliant compaired to recent years. Looking back through her seizure diary she had 3 days where she had a couple of intense seizures but again recovered. We've not used any rescue medication i.e rectal Diazepam for almost 6 weeks now, she was having that every 2-3 days to stop seizure activity.
So continuing to do well, just waiting an appointment now with neuropsychology.
They then plan to increase once more before moving onto pulse rate settings.
Paul

[sturdygirl]

Hi all,
Not brill here, so far things are worse instead of better.
Yesterday Hubs had 2 Tonic seizures with a partial in between.
The violent shaking is really affecting the arthritis & JHS in his knees - he is in so much pain he can barely walk.
I think he's had 2 seizure free days in the last 2 weeks, but then he makes up for it in his sleep.
Sorry to moan, just wanted to vent.
Hope everyone is o.k xx

[PAUL72]

Hi Sturdy,
we've had a bad couple of days, Lisa has had very short seizures but they keep occurring, I hope she picks up by Friday as we're off to Bridlington for a few days, it will be a shame if she can't get out.
Hope your hubs picks up soon too, this condition is so disabling at times.

[marie66]

Hi Paul, Lisa's seizures sound like Coo's - NFLE - short, rapid and aggressive in movement! We're still struggling too - every 10-15 minutes all night long and anytime he falls asleep so on and off all day.
He's currently on Phenytoin - core drug -and vimpat - it helps a little bit so we've kept it going.

Hope things improve for you and yours as I think short, rapid, aggressive seizures all the time are pretty draining all around!
(((hugs))) M x

[crocus]

Hi Paul, how is Lisa these days?

[PAUL72]

Hi Crocus,
we have still have a reduction in seizures thanks to DBS, having said that Lisa still has a seizure most days though. We recently took part in Epilepsy Actions Seize Control Campaign https://www.epilepsy.org.uk/involved/ca ... ze-control if you clink on our stories you'll read about us. We have also been working with another film company to highlight awareness and talk about how we live day to day, i'll have more info on that next month hopefully.
Hope things ok with you & sturdygirl
Paul

[crocus]

Glad to hear that Lisa is maintaining her improvement
Hubby has been referred back to Chalfont and we went there a couple of months ago. His seizures are better (still getting seizures most days, but they are mostly small absence attacks and complex partials), but his memory is causing concern - they are talking about Accelerated Long-term Forgetting (ALF) and he has been referred to another consultant at The National Neurological about this.
Sturdys hubs is having problems ATM with lots of tonic/clonics and he is going for further tests too. She is still cheerful and positive.

[PAUL72]

We spent many years at Chalfont St.Peter before being referred to Liverpool. Thanks for the update on Sturdygirl as I've not seen her on facebook recently but I know things are hard for her and the family at present. Keep in touch.
Paul