My husband, who will turn 37 next month, was diagnosed with epilepsy 8 years ago. Ten years prior to his first grand mal, he had had a motorcycle accident that left him with scar tissue on his brain. The scar tissue is what causes him to have seizures to this day. The first 2 years of living with this disease, we were in and out of doctors, trying to find and explore his options. Our first attempt was medication....we played with combinations, dosages, etc. We tried one's that made my husband very angry, one's that made him gain weight, one's that did absolutely nothing but cost us money.....all of which to no avail in regards to lessening seizures. By March of 2008, he'd had enough and decided to move towards having brain surgery. Unwilling as he was, he recognized that what he was going through, was no quality of life for us. We found out after a week of testing, he is not a candidate for epilepsy surgery. His seizures are not localized, which means they come from more than one region of his brain. Seeing it as our last hope, we were crushed. We went back to trying different meds and dosages, only to see his epilepsy worsen. We have been advised by many neurologists that his condition is severe. We have also been advised by many that epilepsy patients have less than a 5% chance of finding a medication that is going to work for them, because 95% of the time the first couple of meds that are prescribed are usually going to be the ones that work for that person. However, we continue to try and continue to be disappointed by the results. Unfortunately, my husband falls into that category of "not many options left". Right now, we are just trying to maintain. My husband suffers from 60-80 grand mal seizures per year - and those are the ones someone witnesses. He usually suffers from 5-6 episodes, every 3 weeks or so. His diagnosis has caused him memory loss, depression, extreme temper issues, among many others. His hobby is golf, which he is not able to play anymore because with each of his seizures, he dislocates his shoulder. We had some x-rays done of his shoulder and because my husband cannot make it 4 months without seizures (minimum amount of therapy needed after surgery), OFC will not correct the shoulder. "Come back when the seizures are under control".
He doesn't drive or work, other than taking care of the house while I work, which is a full time job in my book. My son, who is now 15, and I, have been taking care of him since the start. Most of our family has been supportive, yet others continue to ask, "have you tried this", "what about this", etc etc etc. After 8 years......YES!! We've tried it!
This post is nothing more than been therapeutic for me. For those of you out there who suffer from or take care of someone with severe epilepsy, I FEEL FOR YOU. This has been so hard on all of us and things just never seem to get better. I wish this disease on no one and I pray for all of you.