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Anyone caring for someone with epilepsy? - Page 5 - Carers UK Forum

Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
hi jean
thank you for your reply how are you and your family?
It is the waiting we find the hardest, sam had another seizure weds evening
which was 3weeks after his last 1 he has usually a 5 week pattern to his seizures
his headaches are crippling him on a daily basis now so were all anxious to get his scan
results ASAP
hope to speak again soon
take care
kaz x
Hi Kaz Lisa and l are fine lisa has epilepsy but at the moment it seems to be controlled apart from absence attacks which is not to bad l went to hospital with my nephew on Wed for his mir scan has he had a brain haemorage 3yrs ago this was his 6mth check they put coils in base of his brain he gets check ups every 6mths to make sure they are still in place but he is doing well he is now back at work part time and he just became a grandad for the first time 9mths ago so that gave him a real boost
hope you get the results soon and they are what you are hoping for you will be in my thoughts
take care
hi jean and everyone.
sorry its been a while since i last wrote
what a year weve had, sam and his wife aand family have finally moved house and wow its
beautiful its a 4 bedroomed life time house { which is ready for any disability}
sams seizures are still happening also his daughter ashleigh has now been diognosed with sleep epilepsy, i very sadly lost my mum which has been very hard to cope with and sam has now had a status seizure when he ended up being ventalated in itu for 4 days its been such a scary time for us all.
but hopefully a new year a fresh start again hey.
i hope you and yours are all keeping well
take care
kaz {sams mum}
Hi Kaz nice to hear from you again l was just thinking about you the other day Lisa is doing ok not been to well on and off for the past few months got different apps at hospital as she has been getting terrible pains in her legs she also has hirchprungs diswase in her bowel and they are thinking of doing and ACE procedure to allow me to do bowel washouts it would be a lot more comforable than the enemas l am having to give her just now l have got till the 4th March to make my mind up glad to here Sam and his family have settled into thiere new home
sorry his seizures have not been to good. l know you will be devastated over the loss of your mum l just lost my dad last year whom l also cared for for the last years of his life but as you say a new year and new start hopefully
hope to talk to you again soon
take care and give my love to Sam and his family
hi all,

my son Garry has severe epilepsy he is 33 years old and has had them since he was 6 months old. he used to untill about 10 year ago have 200 tonic clonics a month they gradually got less.
he had a vagal nerve stimulater fitted for them about 9 year ago he was one of the first in scotland to get one fitted. it certainly worked for him till its batteries went flat about 3 years ago just about the same time as Keppra was being fazed in. they started him on it instead of another operation to change the batteries. and it worked.
he is on mega drugs but his true seizures are now well controlled

he is on daily

2500mg keppra
1600mg tegretol
325mg lamotrogine/lamictal
5mg clobazam

he also has epistatus or rectal diazapam for long tonic clonics

he is also on 1000mg calcium because all the drugs has softened his bones[he has had 5 broken ankles and it is now pinned and plated]

BUT the down side is that he has replaced it with NEAD[non-epileptic attack disorder] a thing that is now a very severe behaviour problem . the professionals say that he induces the seizures to get the buzz that he was getting from the true seizures.it is like a drug tohim and he is shattered after them .

this on top of his severe learning difficulties,no speech, double incontinence,slight cerebral palsy, he turns day into night and night into day.

i am on the board of directors of EPILEPSY WEST LOTHIAN and also work in special education and work with children/teenagers with epilepsy and associiated disabilities.

myra Image
hi myra and all,
my son is 26years old he started with his seizures just over 2 years ago
and was diognosed in jan 06 with a brain tumour which is why he has the siezures.
he also is taking keppra tegrotol and phenatoin which dont seem to be stopping his siezures
but at the minute they cant {wont} operate on him as they say its not right time for tumour as after he would need chemo and radiation and radiation wouldnt work possitvily now so we have to wait?
which is very hard sometimes when he has a status siezure and theres always the risk of
loseing him when he has those type of seizure. sam has a 6 year old daughter ashleigh who is taking eplin day and night to.
hope you and your son keep well
kaz x Image
hi KAZ,

know where your coming from as far as the status is concerned garry did that for so many years .
Hi all, we've had lots of status this last year too although ours were down to infections at the root of things. Image
You know how it is!
It's pretty difficult to keep away from infections, coughs & colds in Winter but we're trying too!

I hope this new year will be a healthier one for us all!

marie x
This is just to see if any one has experiences of the following medications and reasons of why prescribed.

Tegretol ( previously mentioned by Lily )

I know each individual is different and some of the above prescribed as anti depressents or as anti epileptics.Just wondering if others can share their thoughts.

Hope everyone is well
x x x
Not sure if this is any help rosemary
my son is on gabapentin and tegretol ( though think it's called carbamazapine as well ) he is also on kepra and nitrazapam all to control his epilepsy.

I don't know if anyone else see's any of these symptoms in the person they care for with epilepsy but my sons hair stands on end when he fits, his pupils go wide as if he's scared, he vocally goes AH AH AH AH AH AH until the fit ends in which he gives out a loud squeel.
He has not had a convulshion since i have been here but i have been with him when he seemed to fall into an unconcious fit which he leg started kicking and i could not wake him up ( scared the hell out of me ) but his fits only ever last for 20-30 seconds.
Thanks for your comments Ben.

Roberts medication has been altered dramically since I posted about them last March.He does not fit in the expected way that most do but the activity at his temporal lobe causes absences.They can last anything from a few hours to much longer.Unfortunately at these times he can become violent.
If you have time read this link..will give you an idea of what is happening just now if you are interested...its from last October and Robert still in hospital although section 3 order has been lifted.He is now almost off the Diazepam altogether.

http://www.carersuk.org/Forums/viewtopi ... 55&start=0
96 posts