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qestion re; epilepsy - Page 20 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
Hi all,
Hows things?
Off to Neuro this morning, not got high expectations, but he WILL listen and we will not be ushered out this time !
Wow! Totally different Neuro visit than last time!
Apparently there are 4 consultants who rotate, so far we have met 3, like 2!
This one was a funny welsh consultant, very nice and didn't mind me asking 101 questions Image He was also impressed with the video I have on my phone of Hubs having a cluster.
He says Hubs has Partial Epilepsy, and yes, he is probably having them in his sleep.
He even explained what will happen when Hubs visits the sleep clinic and is going to ask them to do an EEG if he has to have a sleep test in hospital.
He is making Hubs an appointment with the Epilepsy Nurses. Image
He thinks these episodes could possibly be caused by the car accident Hubs had a few years back, but then again, it could just be one of those things (at this point he went into detail about the brain Image )
He is changing Hubs meds to something I can't remember...ox..something??, but he will have to stay on the lamotrigine and start the new one one, then increase one, decrease the other, at this point I asked if he could include strict instructions in the letter to GP and explained all the problems with previous increases...... This could be fun Image
Fingers crossed for now
Hi sturdy
Glad the consultant was nice and helpful, it always helps if someone can answer your questions. I hope the epilepsy nurses are nice too, ours are lovely and always happy to talk over concerns.
Interesting that the consultant said it could be due to an RTA as that what caused hubbies problems, although, as you know, its not just epilepsy in his case.

(((Hugs)))) in advance of the meds change - did he explain about rebound seizures? Image
Im afraid that an increase in seizure levels are inevitable during the changeover - its called rebound seizures. Changing the meds slowly reduces the number of rebound seizures, but you cant avoid them completely - they should settle once the drugs stabilise. I always hate it when the neurologist suggests a new drug Image

Hubby had a better day today, but didnt think hed be able to go out tonight, so we had a lovely lunch out in a very pretty town nearby.
hi Crocus,
Thanks for the heads up!
I know that when the lamotrigine was increased it had that effect, but only for a short while, (except the last increase which seemed to floor him for months!)
Neuro didn't explain about this, so thanks for the info Image

We know that the RTA caused his joint problems to accelerate, his physio confirmed this, and although his injuries weren't too serious, quite frankly he hasn't been quite right since it happened.
Previous Neuro said it was too long ago to have an effect ( 7 years ago, seizures started 4 years after) but this one had different ideas, explaining about small scars to the brain that an MRI may not pick up, but then again, it was only a 'maybe'

Lunch sounds lovely, - funny, I had asked Hubs if he fancied a lunch out today as he had managed 3 days clear ( thought I'd make the most of it Image ) then last night he had 2 seizures, on the second one he woke with such a fright he threw his E-cig over the back of his head ! Image Image
Don't think we will be going anywhere today Image
Hi guys, we're having a time of it here again. Hubby's drug levels are all over the place again, he's way over the safe dose limits for phenytoin again so it's seizure city here!
We're stuck on around 15 seizures a day...again.
We're coping! Trying to keep him awake for periods and limit them a bit but if you take your eyes off him he's asleep and seizing.

He has a bit of a sniffle again so I'm hopeful as this clears he'll settle a little.
I hope you're having a more settled time where you are,
M x
Its a nightmare when it all goes to pot

(((hugs))) Marie
Marie, thinking of you at this difficult time.Last night was a bad night for us (i must have only had 2 hours sleep Image ) Lisa had lots of seizures.Lisa is due at The Walton Centre for an MRI to plan for DBS (deep brain stimulation) at 1.30pm so we've got to try hard to make it.You know whats it's like when you miss appointments.....usually a set back for weeks/months.
Hope everyone else is ok.
Hope you got to the appointment OK paul
thank-you Crocus we managed to get there, Lisa just finished the 40 min MRI scan and she was just coming off the machine when a intense complex partial struck.Lucky the scan was completed successfully and we managed to get back in the car before another occured.We'll have to wait and see whether they've spotted anything new or deep brain stimulation will now be our next treatment.
439 posts