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qestion re; epilepsy - Page 41 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
Hi Crocus and Sturdygirl, thanks for the good wishes today.
The seizure you saw on TV is a common one for Lisa but she does have many more intense one's aswell. Lisa seizure pattern is certainly changing (for the better) there's no doubt, it doesn't matter to us how many hospital visits it takes if quality of life improves it will be worth it Image . It's also been good for me with less seizures in the night. Like I say though very early days but so far DBS is certainly starting to make a difference, i'll let you know how we go on.
Im so glad that lisa is improving - and Im sure its a relief to you to get better nights Image
Paul, lovely to hear of improvement x
Epilepsy nurse phoned me back yesterday, she is of the same opinion as you Crocus,- full seizures.
She has managed to get us in to be seen at clinic on Monday Image
Thanks Sturdy, as you've seen on Facebook it went really well yesterday. The neurosurgeon is very pleased with how Lisa's language has improved especially word finding. Lisa still has a seizure or two most days but they do seem to be terminating fairly quickly with few "clusters" of seizure activity.
Lisa's DBS was increased as planned to 8volts of continuous stimulation, we go back in a few weeks time for neuropsychology testing, which is an intense day with memory, language and puzzle solving all being assessed lasting approx. 5 hours.
After this, and depending on the results in June/July they may increase stimulation levels again before we enter the next phase of pulse rate adjustments, this will take us through to new year.
Long way to go yet, but signs are good so far.
Good luck for Monday Sturdygirl.
We had a family outing to see the Epilepsy nurse, - our 2 daughters came too Image They had questions, and basically wanted to know what to do.
We were in there for 45 minutes!
Upshot of the appointment is that the nurse is pretty certain that Hubs is having Generalised, Tonic Clonic seizures now as well as the partials.
He is starting on Keppra at a low dose but lowering the dose of Trileptal to see if that helps with the sickness and low sodium levels.
Not quite sure if he will be kept on both meds but the nurse is going to write to us with the details.
She also talked to us about SUDEP. Image
Another chapter begins..
Hi Sturdy,
I know it's hard to talk about SUDEP but as our neurosurgeon said in Lisa's op anyone with uncontrolled epilepsy there's a risk to life.
Has your hubs every considered surgery? can't remember if I've asked you?
Good luck with AED's it sounds like he has difficult to control epilepsy, but i hope things calm down.
Thanks Paul.
Surgery hasn't been spoken of as Hubs has only had epilepsy since summer 2010, so I suppose it's still early days yet.
The only thing I wasn't happy about was the new meds,- Keppra can cause depression/low mood and weight gain, Hubby already has depression and is 18 stone, so I'm thinking not the best med for him???
We'll see, time will tell x
We found Keppra terrible and Lisa went up to the max of 1500mg twice a day, not good.
It's very unusual for epilepsy to start later in life, you have no idea why?
Watch out for the mood swings with this drug, although it effects everyone differently. Thinking back it also effected Lisa's vision, up and down movement of her eye's which wasn't nice.
Hi Paul, Thanks for the advice.
How long was Lisa on Keppra for? The E nurse was really good, she said any changes/bad side effects after the 'get used to it period' contact us straight away.

As for how and when the Epilepsy started....Hubby had a bad car accident a few years back, (not his fault, - stupid other driver on energy drinks to keep awake, didnt work and he fell asleep at the wheel) since then he hasn't been right.
Hubs didn't get seriously injured, - a few stitches to his head, whiplash, nightmares, shoulder & joint pain etc, but it was a darn good jolt and he thought his time was up, it was his quick thinking that saved his life or it would have been a head on smash. Instead he managed to swerve a bit and go through a farm gate.

The seizures started just under 2 years after this and speaking to the Epilepsy nurse she thinks this may have been a trigger.

I have asked for SS assessment, on advice from the carers centre as things have changed since the last one 2 years ago, any advice as to what to enquire about?
It's a bit of a minefield out there! x
Good news!
Technical assisstance bloke from SS has been, we are getting seizure alarms.
One for in bed, and a pendant for Hubs to wear in the day that he can page me with, or it will page me automatically if he falls.
Both are connected to a pager for me to keep close so I can come running when needed!
We're booked in to get everything fitted on Monday.
439 posts