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Ive never come to terms with my epilepsy
Tue, 07/31/2012 - 18:32Firstly, thanks for taking time to read.
Im 21 and ive been diagnosed since i was 8 years old. You would have thought that i would have been able to come to terms with it by now but i havent.
What im struggling with most is the not being able to drive. People dont understand how much it means to me and its so out of control its scaring me. My epilepsy has pretty much ruled my life, and has sent me into countless depressions, and ive lost a lot of friends over it. Ive been on every type of medication in the UK thats available to epileptics and none of them have worked. Ive been considered for surgery but i had scans and they couldnt determine where in my brain my epilepsy starts so they couldnt operate. This upset me even more.
I have grand mal and absent seizures and ive recently started randomly twitching everywhere all the time and its scaring me. Im on Sodium Valproate (epilim) and Lamotrigine and im taking 10 tablets a day and its still crazy. I dont know what to do :( It upsets me alot. I often get confused and sometimes i know what i want to say but i cant seem to put a sentence together and talk or the word will be there but my mind cant process it to come out which frustrates me.
My physician says that my epilepsy is rare in the sense that most people who are diagnosed so early grow out of it and that they havent been able to achieve full control in 13 years.
Please, if anyone can share any tips on coming to terms and dealing with epilepsy id be so grateful.
Many Thanks
Codie
Comments
Re: Ive never come to terms with my epilepsy
Submitted by KMac8281 on Wed, 2012-08-01 - 11:26
Re: Ive never come to terms with my epilepsy
Submitted by L435 on Wed, 2012-08-01 - 11:56
oh KMac8281, i know exactly how your feeling,
I dont know when my seizures are coming on either although people around me seem to know...my mum says she can see them coming hours before but she has only just started noticing it (after 13 years) and i dont live with her anymore which is great, cause i love the freedom after being wrapped up for so long but it makes me scared and anxious because of many reasons. some of the main ones are killing myself by falling down the stairs and nobody finding me or seriously injuring myself like falling onto the cooker but i know i cant live at home all my life. Ive been on every combination of drugs possible and its still not controlled so its really upsetting me. Im missing days of college and falling behind so i dont know what to do
I hope that the VNS works for you, i wish i had that option
xx
oh KMac8281, i know exactly how your feeling,
I dont know when my seizures are coming on either although people around me seem to know...my mum says she can see them coming hours before but she has only just started noticing it (after 13 years) and i dont live with her anymore which is great, cause i love the freedom after being wrapped up for so long but it makes me scared and anxious because of many reasons. some of the main ones are killing myself by falling down the stairs and nobody finding me or seriously injuring myself like falling onto the cooker but i know i cant live at home all my life. Ive been on every combination of drugs possible and its still not controlled so its really upsetting me. Im missing days of college and falling behind so i dont know what to do
I hope that the VNS works for you, i wish i had that option
xx
Re: Ive never come to terms with my epilepsy
Submitted by binkey16 on Tue, 2012-07-31 - 21:12
Hello Codie, I was diagnosed with grandmal seizures at age 16, I am now 43, my diagnosis isn't as severe as yours, I did start driving at age 18, never was very open about my seizures until I started working and felt it important to tell my employers and co-workers, I did feel like an alien then. I never did tell the men I dated and when I did tell one well u can guess the rest of the story, but the man I've been married to for 17yrs took it well on our first date, I told him and his response was that's ok i'm an EMT, talk about fate.
the real reason I responded to u, is recently my seizure disorder basically took over, I totalled my new car on 6/24, and can actually say I am lucky to be typing to u, I won't be driving for a long time, I had another seizure at work last week after med changes,and I possibly lost my job or have to look for another one, I find my strength in my family and friends, as my mother said when I was 16, epilepsy is just another block in the road we have to get through, I always remember her advice in difficulty times, 26yrs epilepsy is just a diagnosis, not something that should stop your life.
Hello Codie, I was diagnosed with grandmal seizures at age 16, I am now 43, my diagnosis isn't as severe as yours, I did start driving at age 18, never was very open about my seizures until I started working and felt it important to tell my employers and co-workers, I did feel like an alien then. I never did tell the men I dated and when I did tell one well u can guess the rest of the story, but the man I've been married to for 17yrs took it well on our first date, I told him and his response was that's ok i'm an EMT, talk about fate.
the real reason I responded to u, is recently my seizure disorder basically took over, I totalled my new car on 6/24, and can actually say I am lucky to be typing to u, I won't be driving for a long time, I had another seizure at work last week after med changes,and I possibly lost my job or have to look for another one, I find my strength in my family and friends, as my mother said when I was 16, epilepsy is just another block in the road we have to get through, I always remember her advice in difficulty times, 26yrs epilepsy is just a diagnosis, not something that should stop your life.