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qestion re; epilepsy - Page 23 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
Hi there - we're plodding on! We had a restful few days away so we're ok-ish!lol
The latest blood results came in though...and they're dire again!
The white cell sample clotted so it needs redone again Image and the drug levels? They are bouncing around all over the place! Last time they were touching toxic at 26 and two weeks later they've dipped to 14! It's within the safe range but nowhere near OH's optimum level so he's struggling with longer post-ictals and yet again we have a seizure increase!

Happy days! Seriously though, we're coping!
How's everyone else?
Keep strong!
Marie x
We're continuing to battle on, Lisa's not been very good the last few days so she's been in bed most of the time.Still waiting for MRI results and case meeting to take place at The Walton Centre.This is with the planning of D.B.S (deep brain stimulation).
We had the paperwork through in preparation for Lisa's re-assessment for social services support, we found out that our care manager has left (or made redundant) and someone else is taking over so i'm a bit concerned...but i'm sure we'll continue as we are with direct payments, if not let the battle commence.
Sorry OH is having another difficult time Marie, we seem to be in simular boat.
Hi Sturdygirl...good new about the epilepsy nurse...although it a bit off it's a start, try and get regular appointments plus ask if they have a phone/message service ours does and it's been very handy.
Hi Paul, hope things are a bit more settled for you two soon! Yeah, it's a wee rocky boat we're in right enough! We get there though don't we! lol
Re: Lisa's assessment with the SServices - our was a positive experience, we asked them to up the hours and the respite, told them we wanted to take some respite time together with help from our family - our daughter PA's for us - and they agreed!

Think outside the box for some assistance with activities or time out and get it added to the careplan Paul! Rosemary put this to me years ago and it's true...shy bairns get nowt!
I hope you're both ok, I know panic reigns and things escalate here, when 'assessment time' kicks in!
Stay strong,
Marie x
Thanks Marie....epilepsy is the most difficult condition to describe isn't it, you go from being normal to 100% disabled in seconds.Many people still don't understand.I do get cheesed off when you have to explain the situation over and over again Image ....oh well.

Caree is trying new drug Lacosamide (Vimpat). The good news - he's not had a major seizure for 2 weeks when he usually has them daily. He's also more alert, less sleepy.

Unfortunately, it's never all good news is it? He's constipated, continually hungry, making an endless cross-sounding noise, slapping his head, grinding his teeth, banging his chin, biting his arm etc. He can't communicate with speech or signing so can't explain how he feels. Dr is checking physical stuff & dentist is checking teeth.

Has anyone else had experience of this drug?
Hi Ellcee,
my wife tried this drug when it first came out, but for her it just made her seizures worse with many "clusters" and at one point these ocurred on a daily basis.
Everyone reacts differently and the side effects for us were mostly the usual double vision, unsteadyness and drowsyness.Presently we're waiting to hear of test results for DBS (deep brain stimulation) with the hope it will be offered/confirmed for later in the year.
good luck with the drug.
Hi Ellcee,
As relative newbees to epilepsy drugs Hubs has is only on his 2nd trial so far, Lamotrigine didn't work too well for him, so he has just started on Oxcarbazepine.
So far, tiredness is an issue, but he also has sleep apnoea so that doesn't help.
He is still having regular seizures, but is seeming to be able to recover a bit better in a shorter time frame, so fingers crossed for now.
This past few weeks haven't helped as I had to have an emergency op - my appendix perforated - so Hubs has been worried = more seizures
Kids have been absolute stars, looking after us both!
I hope the problems are accounted for soon, best wishes xx

How is everyone else? I've been in a bubble for a few weeks so have a lot of catching up to do!
Hi sturdy - Im not surprised that you havent been around. You probably still dont know whether you are on your head or your heels Image
Anyway - we are still pootling along. Hubby had a bad time over the bank holiday weekend and stayed in bed sleeping for several days - I got a lot of gardening done Image
He has still got a couple of appointments with the neuropsychologist. Image I think that when she talked to him she thought that there wasnt a lot wrong, but as she has investigated it she has discovered more and more problems -at least, thats the only explanation I can think of. 1 appointment has expanded to 5 now Image and he missed a couple because he was unwell so its dragging on quite a bit.
Hi all,
Thanks for your replies. Dr & dentist have found no obvious other physical problems, so the issues are probably side effects. Currently awaiting input from the Epilepsy nurse. If they are side effects, then just hoping that either we can fine tune or that they settle down with time because, for us, 2 weeks without a major seizure is unheard of.
Over the last 23 years we have tried just about every drug, in numerous permutations, and the Ketogenic Diet. Also have Vagal Nerve Implant, which does help.

Paul, hope that you have good news regarding the DBS and hope that you all have improved seizure control, without side effects.

Regards, Ellcee
I hope they get it sorted ellcee, side effects are, by nature, unpredictable. Ive always found our epilepsy nurses very approachable and helpful.
439 posts