Coping with a family

[fredboyd]

Hi Everyone,

I'm new to forums and i've read through a few and see how people have got some answers from it, so here goes:

I'm 41, married with a 15 year old and a 5 year old. I work part time. I have tempral lobe epilepsy which is not controlled well just now. I am on Tegretol, Lamotrigine and Gabapentine for this but I am still having seizures about every 5-6 days. My seizures are grand mal and normally last from 1-2 minutes. Last week I had a 6 minute seizure. My husband is great and my 15 year old is great but I can't be alone with my 5 year old as he gets really scared. I sometimes get about 10-15 seconds warning of this, other times I don't get any. I'm finding it really difficult as i'm having to get family to come and "babysit" me when i'm with the wee one. I can't take him to the park when I want to and I can't take him to the shops. I feel i have no independence at all. I was starting to work from home but my employers are concerned that I have a seizure at home and there is no-one there so they are rethinking whether it will be feasible. The neuroligist mentioned the posibility of surgery for we which terrified me but now i'm thinking it might me a good idea.

Just getting a bit down with my whole situation and was wondering if anyone has any knowledge about the surgery.

Thanks.

 

[Nakamova]

Hi fredboyd, welcome to CWE!

Surgery's obviously a big step, so the more info you have the better. Make sure you feel very comfortable with the doctors who would be involved. I would ask a lot of questions about success rates over the long term for that particular surgery center, how much experience their team has, how long the whole process might take from start to finish. What the risks are, whether post-surgery you will still need meds, etc. Here's some helpful info: http://www.epilepsyfoundation.org/ab...evaluation.cfm

Surgery has really helped some folks: http://www.sciencedaily.com/releases...0404204417.htm

Some CWE members have had surgery as well. Here are some threads from our archives to check out:

http://www.epilepsyfoundation.org/about/treatment/surgery/evaluation.cfm
http://www.coping-with-epilepsy.com/forums/f23/major-surgery-vs-seizure-control-11809/
http://www.coping-with-epilepsy.com/forums/f23/cheers-charlie-11808/
http://www.coping-with-epilepsy.com/forums/f41/almost-time-11741/

 

[fredboyd]

Thanks Nakamova

Thanks for the information. That'll give me some reading tonight. Hee Hee.

My neurologist is excellent. I've got SO many questions I need to ask him. Think i'll need to start writing them down. I know surgery is a big step but I do feel i'd have a much better quality of life, even if it just reduced the amount of seizures and the severity of them. It would put a lot less pressure on my husband, children and the rest of my family.