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qestion re; epilepsy - Page 24 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
thank-you Ellcee
Hi, How is everyone?

Hubs is on the last week of the change over meds wise, target dose reached of the new one, just on the last reduction of the old.
We haven't seen too much of a change as yet, but it's early days.
Strange things are happening though!
He has started to make noises now, just as if he is trying to say something, but it comes out as a mumble/groan, and his arm movements are getting more exaggerated.
It's as if every so often the seizures evolve into something new just to keep us on our toes!
Can't wait until we see the Epilepsy Nurse next month, so many questions!

Best wishes everyone
Hi sturdygirl
Interestingly, these are similar symptoms that ellcee posted that her husband is getting. Your OH isnt taking Lacosamide (Vimpat) by any chance?
Hi Crocus,
No, Hubs has been put on Trileptal (oxcarbazepine), funny though, on the first lot of meds he was put on, (lamotrigine) we saw changes then too.
Fingers crossed things will settle a bit soon
Thanks Melly1,
Certainly sounds like Hubs is on quite a low dose.
I've had a look at the leaflet and it says max is 400mg/day, perhaps the Neuro will up it when we next visit.
I get absences (at least, I haven't had an aura or a full-on seizure for about 6 years - touch wood) and am on 600mg Lamotrigine (so it *can* be more than 400mg/day), 1500mg Keppra and 1mg Rivotril. I'm mostly controlled but, as a Medical Secretary, can't stress enough the importance of hassle, hassle, hassle the GP/Consultant's secretary/the Consultant him/her self/the hospital. From my work point of view, people like you/me can be a pain when we "demand" appointments/try to queue-jump but there have been plenty of times when people like you/me have rung me asking if they can be squeezed into a clinic and the appointments people manage it....somehow! And especially if there are problems. Fib a bit if you must - the more pressure, the better. It's our NHS, after all!
Hi Trippedup,
Thanks for that, I always feel so very guilty telephoning as I know how pushed the NHS is.
I will though, if I feel it is very important.
Once again I'm in a tiz and asking advice!
Hubs had a bad day yesterday seizure wise, but at one point we were in the garden, he just got up and walked off (very slowly!), went into the house and tried to put a towel in the washing machine!
All the time I was behind him, speaking gently, saying his name, asking what he was doing, if he was o.k but getting no response at all.
He then suddenly jumped, nearly lost his balance and didn't know where he was or what he was doing.
I can't blame this on the new meds as he has moved once before, before he started them, but only a few steps.
I didn't try to stop him as I just didn't know what was going on.
What do you do if someone starts to wander? Stop them? Just follow them? Try to manouver them to a safe place?
This again is new to me and a tad worrying.
*sigh* I'm wondering what's next
I am going to try to phone the Epilepsy Nurse for advice later, (Hubs first appointment with them is in 2 weeks time, I can't wait that long!) But was hoping someone here may have some ideas for me.
Thanks all
Hi sturdy, thats a classic partial seizure. Hubby doesnt do this, but a friend used to do this all the time. You wont be able to stop him so probably best to try and steer him into a safe direction.
Might be a good idea to contact the epilepsy nurses as they may have some other tricks up their sleeves Image
Hi guys, we're still struggling on, how's everyone else doing?
Sturdy, we lock all the appliances as if OH stops seizing beside an appliance he pushes all the buttons or flicks switches on/off!

I've not been on much, things are a bit hairy here, our wee baby, grand daughter needs surgery and with the added stress, we've had a major increase in seizure activity. I'm hoping as we come to terms with things, he will settle a little.
We're trying to stay positive.
Keep strong everyone!
M x
Hi all,
Had no internet for a week Image Surprising how much we rely on it!
Marie, I hope your grand-daughter gets on o.k. xx
Same problem here too, Son had his toe op, but I think it was the worry that made Hubs worse.
I spoke to the epilepsy nurse, she was lovely, just advised to speak to Hubs calmly as he would be able to hear me and a friendly gentle voice will help, try to steer him to safety if possible and I could increase his evening meds dose, but with him just starting on these tablets I said I would rather not just yet.
Hubs got very upset tuesday after a small cluster, said he was so scared Image
Appiontment is 9am monday, so we can have a good chat then.
439 posts