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qestion re; epilepsy - Page 19 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
I didn't Crocus, When I spoke to the Neuro secretary, she told me to contact the GP first, which I did.
Hubs is back at the hospital in a few weeks, Neuro should have received a letter from GP by then, so I will ask about contact numbers for the Epilepsy Nurse, explaining that I really need to be able to contact someone occasionally who knows whats what. (GP was great, but it isn't his area of expertise)
Epilepsy is very seldom a GPs area of expertise TBH. Im glad youve got an appointment with the neuro soon and its good that your GP is writing a letter.
Hi guys how are things going?
We're just waiting for the better weather as things tend to settle a wee bit once flu weather leaves!
M x
Hi Marie,
3 days no seizures here Image (sshhh, whisper, don't want to tempt fate Image )
We even went out on Sunday! Image Image
Had quite a bad week-end with hubby, although he is OK (ish) now.
On Friday he seemed fine, so we dug up a great big shrub in the garden that I have always hated. It took quite an effort and left a big hole - as you can imagine. Suddenly he had a tonic/clonic seizure and fell - straight in the pit Image He was unhurt apart from a few bruises and got very muddy. Looking back its actually quite funny....
Hi Marie, we've had a difficult few weeks as we wean off this latest drug called Perampanel. We've had some good news though and hopefully when Lisa settles downs a bit she can go back to Liverpool for her MRI scan.Lisa has the vagal nerve stimulator implant (although it's been turned off for 3 years) and as it's wrapped around her vagal nerve the danger was of this coil becoming hot during a 3T MRI, after 8 months they've thankfully found a way around this.
Basically they want detail images of her frontal lobe to look for abnormalities,they have to ensure there's no possibility of further surgery before we continue down the DBS route.
Hope everyone's ok.
How is everyone?
We have been doing very well, up until yesterday Hubs had managed 7 days without a seizure! Image
He has had his 'moments', - a few simple absences that don't really affect him badly, just knock him off for a little while, but no head thumpers.
Then yesterday afternoon he had a cluster and slept for 4 hours, woke for a while and went to bed.
The difference has been amazing this week, he has been so much brighter. Joint pain has been a problem, but even that seems more copeable without the seizures.
maybe this is the start of something good.....
Im sorry to say that hubby has has a very time of it since I posted on 5/3.
He was just starting to get better when I fell on Weds and ended up in A&E with a suspected broken ankle. Fortunately its only a bad sprain and ligament damage, but hubby doesnt cope well when Im ill/have problems. Ive had to get him to do far more than usual (because I cant) and he has responded by getting very stressed and having lots of fits again, which makes it harder for me and generally makes the whole situation worse, which results in him having more fits......
Aw crocus (((hugs))) for you.
I know exactly where you're coming from. It seems for most people stress is a major trigger so when something happens the delicate balance it sent spiralling - been there too!
Sometimes felt I could never be ill as everything just got 10 times worse! Do you know what I mean?
Try to stay strong, hope things settle soon, I'm thinking of you,
M x
Sometimes felt I could never be ill as everything just got 10 times worse! Do you know what I mean?
Oh yes.....
And sometimes it feels almost as if hes punishing me for daring to be ill - though the rational bit of me knows thats not true
439 posts