Looking for others who understand...

[LadyLee80]

Hello, my name is Lisa. I have had epilepsy for 14 years. I was 19 and contracted spinal meningitis, which lead to swelling in my brain. A few weeks after I got out of the hospital, I had my first major seizure. I have tonic-clonic, partial -complex, abscence, and paralytic seizures. I have tried 15 medicines, holistic therapy, meditation...nothing has worked. I WILL NOT have brain surgery. I have considered the VNS therapy, but it is expensive and risky. In the last year my seizures have become much worse, and in the last 3 months, it has been a nightmare. I had to take a medical drop this semester from university, I can barely leave my house, and am having seizures more than once a day. I feel so alone, and although I have a loving family who supports me, they still don't fully understand what living this life is like. I am at my end.

 

[car05161967]

Hello, my name is Lisa. I have had epilepsy for 14 years. I was 19 and contracted spinal meningitis, which lead to swelling in my brain. A few weeks after I got out of the hospital, I had my first major seizure. I have tonic-clonic, partial -complex, abscence, and paralytic seizures. I have tried 15 medicines, holistic therapy, meditation...nothing has worked. I WILL NOT have brain surgery. I have considered the VNS therapy, but it is expensive and risky. In the last year my seizures have become much worse, and in the last 3 months, it has been a nightmare. I had to take a medical drop this semester from university, I can barely leave my house, and am having seizures more than once a day. I feel so alone, and although I have a loving family who supports me, they still don't fully understand what living this life is like. I am at my end.

Lisa, My name is Christopher. I know what you are feeling. While my seizures have been pretty much stable for the last thirty-six years(my sixth and most recent shunt surgery was in 1976 when I was 9yrs.-old), I have had the occasional seizure along with the big spike when I switched from Dilantin to Tegretol in 1983 at 16yrs.-old. I had a big one Super Bowl Weekend 2011, resulting from fumes from the oil furnace in the basement. Before that, I had one in 2005. I am not sure what caused that one. Prior to that was 2002 when I ran out of my meds.

I certainly know what it means to feel alone in this fight. I got married in 1992(divorced in 2000). I had a seizure in bed one weekend in 1995. My (ex)wife just stared at me and didn't try to keep me from potentially falling out of bed(platform waterbed), or hitting my head(bed had a big headboard with shelves). In 1998(a year after we separated), she told me that, she had always wished that my 'disabilities' would 'just go away'. It was then, that I not only wished I had never married her, and made plans to divorce her. The line from the movie 'Ferris Beullar's Day Off', where Ferris says referring to Cameron, "he is going to marry the first girl he lays"(I apologize for the crude reference). The only difference between me and movie reference is, I was already engaged to the woman.

I have no problem leaving the house, but I don't trust a lot of people(in addition to family) to understand what I go through, even though my seizures are stable. I am able to ride a bike and, I feel I can only count on other cyclists' to understand what I am going through. Since my regional biking club promotes always carrying ID. A website on the Net called 'Bike Forums'(http://www.bikeforums.net), has a section for cyclists' that have a disability.

I don't go out to parties, or movies, and rarely to concerts anymore.

I do have a girlfriend who is a year older than me. But it is a long-distance relationship that has been going on for five years. She lives 1,800mi. from me, even though we are both in the U.S.

 

[Nakamova]

Hi LadyLee80, welcome to CWE!

I am so sorry for your nightmare. If you haven't yet tried a dietary/nutritional approach or neurofeedback you might want look into those -- they've helped some people reduce the number of seizures. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/ and here: http://www.coping-with-epilepsy.com/forums/f22/intractable-epilepsy-tied-nutritional-deficits-944/ as well as: http://www.atkinsforseizures.com/

Best,
Nakamova

 

[Cint]

Hi LadyLee and welcome,

I'm sorry and sad to hear of your quandary. I do hope there is something out there that can be found to help control your seizures.

Mine started at the age of 22, out of the blue, no meningitis, head injury, etc. First as SP's the into CP's progressing into TC's. I tried many meds, to no avail, had a left temporal lobectomy, was seizure-free for 14 months. In 1998 I had my first VNS surgery and although it hasn't completely stopped the CP's, it has helped me. But there are consequences, but so are there with meds, brain surgery and continual seizures. You have to seriously weigh all the options.

Hang in there!

 

[cazzy]

hi lady,
i understand your fear of surgery but for what it worth i known 4people who had surgery and they living normal life finish uni etc and glad they had it...but everyone different