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Anyone caring for someone with epilepsy? - Page 10 - Carers UK Forum

Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
Hi,and no probs!
We all help each other when we can! Image

I'm glad you got a nights sleep - I know how the lack of it wears you down! Image

I get to sleep 2 nights a week now (using a D.P.) and soooo look forward to them you would not believe! Image

Hope things keep stable - at least a bit!
marie x
Hi I have epilepsy I was diagnosed age 3 and have been on anti-convulsants since then. I went to the David Lewis Centre for my education. I have tried many AEDs at present I am only taking Keppra but I am not having a good time at the moment. I have had difficult experiences with drs, nurses etc over the years.

Its good to speak with other people I know my epilepsy affects me on a daily basis even if I am not having a seizure. I use a wheelchair as I have CMT also. I live alone in an adapted flat and have carers to support me I have an individual budget which allows me to buy in my 'own care' I use agency carers and employ a Personal Assistant.

bfn x
Hi Hillsong

I care for my Mum who has Epilepsy which was brought on when she had her first stoke. The stroke consultant says that the strokes bring on the epilepsy and the epilepsy guy says its the other way around so now we don't see either of them as the appointments themselves could bring on an attack for Mum and they never do anything to help. I have never found that any of the professionals are very interested.
Mum is on Epilm Chrono 800 mg a day. She used to be on Kepra but I found that it aggrivated her Dementia and made her more confused than usual. Her seizures can last between 2 and 4 hours each time and are very frightening to witness.
Sorry to hear that you are not having a good time at the moment, I do hope things improve for you.

Blue Image
My OH has had post stroke epilepsy since 1987 among a lot of other health problems, it took 2 years to be diagnosed,he is on Tegretol and and his epilepsy is well controlled he has not had a seizure for a good number of years.it is the stroke that causes the epilepsy as everyone gets a certain amount of brain damage with every stroke, my OH would be having a conversation and would just drop off into a type of coma which could last from 4 minutes to the worst one, 4 hours , then he would come round and pick up the conversation again where he left off.
Hi my wife Lisa has complex partial epilepsy.Lisa has had epilepsy since she was 7 (now 37) unfortunatley it's still uncontrolled and she usually has seizures or clusters of seizure activity every few days.Despite this we've tried to lead as normal a life as possible & we even had a daughter (who's clear from the condition presently) now aged 7.We live in Derbyshire in the East Midlands but travel to the NSE (National Society For Epilepsy) hospital at Chalfont St.Peter,we also visit The National Hospital For Neurology & Neurosurgery in London.We've tried most options over the years including most AED's (Anti-Epileptic Drugs),surgery & the VNS (Vagal Nerve Stimulation) without much luck.Presently Lisa is weaning onto a new drug called Lacosamide (vimpat) but it's too early to say if it's helping.If i can help anyone by sharing info, please get in touch,
Hi, how are you? I care for my friend who has complex epilepsy following an injury. If I can help with sharing information, let me know - you may also want to look at www. epilepsy.org.uk for general info.
96 posts