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qestion re; epilepsy - Page 40 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
lol, thanks..... didn't think we was that good Image but the responses from people have been out of this world, which I never expected....it's important to share our stories and listen to others and have a moan now and again, it helps us all cope day to day Image
Hi Paul, How is Lisa these days? Is the stimulation working? Has it reduced the seizures? The program doesnt actually say what happens to everyone.
hi paul i am sorry i missed it ,i started to watch the first one ,but i found it too distressing .
i have found your episode on demand 5 ,i will watch it later.
all the best.
I understand David, it's easy for us to talk about it as Lisa's been through that many surgeries over the years. I hope you do have the courage to watch all four episodes eventually, please let me know if you do watch....episode 2 we in and it's not just about surgery but family backgrounds etc.
Paul
Thanks for the update Paul, Im glad things are improving Image
That's ok Crocus, Lisa is doing ok with mood, memory and concentration all improving.
On the down side she does seem to be sleeping more and seizures still occur most days, however she is having less seizures and most seem to terminate very quickly....maybe 15-20 seconds sometimes less.
There's still a long road ahead with many more tweaks and adjustments over the next 18 months. We're back at hospital tomorrow for next increase then back again on the 13th March for another review, after this we're taking a 3-4 month break to get a true picture on her seizures, but DBS adjustments will recommence in the summer every 6 weeks or so until next year.
Paul
Gosh, that is a long-term thing. I had sort of assumed that it could all be sorted out while she was in hospital after the op. Its good that the seizures are shorter, I always find that the longer the seizures go on for, the longer it takes hubby to recover from them.

PS It was really weird seeing the footage of Lisa in a seizure - she rubs her nose just like hubby does - I had always been given the impression that it was rare to do that and here was someone else doing exactly the same thing Image
Hi,
Good luck today Paul x
Crocus, Hubs rubs his nose too! He also pulls the neck of his t-shirt up and rubs that up and down his nose.
Hubby's decided to go to another level...had a big shaking do while he was awake on sunday.
Luckily he was sat down and it didn't last long (less than 30 seconds but felt like a lifetime!)
He also came to quicker than usual, within a couple of minutes he said he was o.k but felt sick, a bit tired and his joints were really painful.- no wonder!
Going to have a read up on what to do, again this is a new one for me, (he has only done this in his sleep before now) so need to know what's what, also gong to phone the E nurse.
Every time we think he's getting somewhere another evolution takes place Image
xx
Thats a generalised tonic/clonic seizure, sturdy. Theres not a lot you can do except make sure he is safe while he is fitting and then he will probably want to sleep afterwards. Also - check to see if he has been incontinent during the fit.
I usually get a towel to put under hubbys head with my hand underneath as he salivates a lot and this protects his head from rapping against the floor. Probably a good idea to phone the E nurse.
439 posts