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qestion re; epilepsy - Page 34 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
hi ,i did not realise there were so many people here caring for people with epilepsy.
i am working by way through all 228?pages of posts .
as you may know i have recently returned to the forum,i must have missed this topic ? when it first started back in march 2012.
my twin brother malcolm suffers from partial complex epilepsy , takes three types of meds twice a day ,and is having around 8 or 9 seizures a month.
bye for now.
Hi David,

Glad you found us Image
My Hubs also has Partial Complex seizures, and sometimes he has a little wander too Image

How's everyone doing?

Hubs has been up and down, but there is definately an improvement since increase in meds and C-PAP machine - they aren't a daily occurance now - this week since Sunday he's only had 4 Image
Hi david Image
Im really glad to hear that sturdy. Ther last time hubby went to the neurologist he had his kepra decreased (I dont know why - I didnt go with him and he cant remember) and ever since then he has been much worse. Image
Oh dear Crocus, thats not good at all Image
Can you or Hubby give them a call? Or perhaps the Epilepsy Nurse?

Can I ask, how is your Hubs doing on Keppra? As in any side effects etc?

Only asking as that is next on my Hubby's try out list if the Oxcarbazepine keeps making him sick and fluey,....seems the lesser of two evils for him at the moment, ...put up with the sickness and yukky feeling but have fewer seizures ...or try out something else and take a chance....Hubs wants to stay on Oxcarb and put up with it as its easier to cope with than seizures (and he's lost a bit of weight! Image ) but Neuro has other ideas
Hey, Paul, you floating about? How's Lisa doing?
Saw your post on FB, I'm looking forward to seeing you all on Brain Hospital, so pleased you could show it effects the whole family. xx
Hi Sturdy, yes put I comment on p22 (I think lol) of this thread. Lisa wasn't very good yesterday but in between she is a completely different person and she's having 2-3 seizure free days in between the bad days which for Lisa is unheard of. There's a long way to go yet, however her memory and mood is so different. We're back at The Walton Centre on 17th Dec for the next increase, then we'll have regular visits all next years approx. every 6 weeks.
i have been reading about the number of seizures some of the carees have .
mal used to have 5 a day sometimes when i started caring for him ,now he has maybe 2 on a bad day .
i have noticed that sometimes he shivers after he has had one.
Hi david
Im glad mel is improving. Seizures really take it out of you Image
I cant say Ive noticed hubby shivering after seizures, but then he usually just sleeps it off for several hours. Do you think it might possibly not be shivering, but residual shaking from the seizure?
hi crocus ,mal does not shake ,he waves his arms around ,snaps his fingers ,moves the feet around and swears, and sometimes when he shivers his teeth chatter.
also sometimes he goes to sleep,his seizures have changed over time .for example at one time after he came out of a seizure ,he used to try and change his shoes because he was under the impression he was getting ready to go to his day center .it would not matter if it was nine in the evening at the weekend .and if he had one when he was waiting for his driver on a weekday morning ,he would change back in to his slippers Image
Ah, I didnt realise he only had complex partials. I must say, Ive not heard of people shivering after a seizure, but with epilepsy the one thing I have learnt is that everything is variable Image
Variable isn't the word Crocus,
Hubs has gone from simply staring into space, ( we thought at first he was just ignoring us) to tapping, stroking his nose, undressing, shouting, pulling his t-shirt over his face and even wandering. All down to partial complex seizures. Never a dull moment here!
Hubs shakes a lot after, loses time, needs to sleep it off and is often very confused - he gets some strange ideas in his head.
It is quite amazing how the brain works.

Just wondering....can any of you spot an early warning sign of impending seizures?
Quite often Hubs has them just out of the blue, but sometimes he gets a droopy right eye or he looks really tired, or the colour drains from his face.
439 posts