Hi. I'm NancyJo and I am the wife of a person with seizures. He feels he has had them since his teens but following a car accident more than 20 years ago and an unknown viral illness more recently (11 years), seizures have taken over our life. From funny sensations, uncalled for laughing and other minor things, we have progressed to periods of forgotten agreements, conversations and decreased social life. There have been several episodes of status E, too, the last one was 50 minutes. I am frustrated with the lack of help I receive from professionals in trying to understand "what this means" and the changes it has brought to our lives. I long ago lost my coping skills and my husband's strong denials and stubbornness has made things all the more difficult.
Sometimes I feel like we are making progress, then he starts having regular seizures again, oddly, particularly in the latter part of the year. His neurologist (with a GREAT reputation) doesn't seem to identify with the seasonality of it. He has been on Dilantin (5 daily) for years. He is ultra sensitive to many other meds and basically rejects even considering any others because of previous bad experiences. He has chronic back pain from the prior car accident and requires narcotic medications to get out of bed. He does not keep a seizure diary because "writing is very difficult" for him.
I look forward to receiving the support I need as his caregiver. As many have reported, I have to stay ready and vigilant for whatever may happen to him during any given day while he basically "checks out" and has no idea what happens or how bad it is.
I'm very frustrated!
Sometimes I feel like we are making progress, then he starts having regular seizures again, oddly, particularly in the latter part of the year. His neurologist (with a GREAT reputation) doesn't seem to identify with the seasonality of it. He has been on Dilantin (5 daily) for years. He is ultra sensitive to many other meds and basically rejects even considering any others because of previous bad experiences. He has chronic back pain from the prior car accident and requires narcotic medications to get out of bed. He does not keep a seizure diary because "writing is very difficult" for him.
I look forward to receiving the support I need as his caregiver. As many have reported, I have to stay ready and vigilant for whatever may happen to him during any given day while he basically "checks out" and has no idea what happens or how bad it is.
I'm very frustrated!