Epilepsy

I can't recall if I have ever blogged about my epilepsy before, and I'm not going back through all my post titles, so this may be a partial duplicate entry . . .

When I was 17 years old, I suffered a grand mal seizure at church camp. I had been water skiing that afternoon and had a significant fall, hitting my head pretty hard on the water (which may seem kind of silly, but you can really hit water painfully hard). For years I never said anything about that to doctors because it seemed so silly, but just after that, I got in a car to go back to camp and dozed off only to be woken multiple times from startle reflexes. After we got back to camp, I had a seizure. Within a couple months I underwent a bunch of tests, had another seizure, was diagnosed with epilepsy and started on medication.

The first medication was tegretol, and the effect that had on me was terrible. There is about a month of my senior year of high school that I pretty much do not remember (and it's not due to age . . . I couldn't remember it at the time either!!!) I was then put on phenobarbitol and responded much more positively to that. It's hard for me to remember the exact number of seizures I've had in my life, but it has been very minimal and for that I am very thankful. I know I had one or two in college, several right after Brent and I were married (when I was not taking medication with doctor's permission) and another the day after James turned four. That was the last one, but also the worst one . . . lasting the longest and having the longest impact on me. Brent and I were at a marriage conference at our church that weekend. It was pretty much pointless for me to have attended. I cannot remember anything about it. I just felt groggy and out of it the whole time. That was almost 12 years ago now. Thank the Lord!!!

I really have nothing to complain about and I am really thankful for God's protection of me over all of these years. I had four babies and during the last three pregnancies I was off the medication for 16 weeks without a single problem. So I was shocked when I left my neurologist today with my eyes filled with tears. It should not be a big deal, and I'm sorry if there are others who have ongoing seizures who read this, but somewhere deep inside I have always thought that one day I might be able to be medication free. It's been 12 years now since my last seizure; 20 years since I started taking medication. But I'm pretty sure that without saying it directly, my neurologist confirmed that unless I ever live in New York City or someplace else with great public transportation, she will not recommend I discontinue medication. I went into the appointment knowing that she is conservative and concerned about my safety and the safety of others (regarding my driving if not on medication), but I held onto a glimmer of hope that she would say something like lets do one more MRI, and see what it looks like. Instead, she said she doesn't see any reason to do an MRI. There's nothing about it that would change her opinion. I really like her and respect her, and deep inside I feel like she is right. I would hate to be driving and hurt someone else because I had a seizure behind the wheel.

I don't know what it is about being on medication that is so bothersome to me. It really shouldn't be a big deal at all, but it definitely affected me today. I am on a new medication now, Keppra. I don't notice any side effects from it, but compared to phenobarbitol, it is a bit costly. I can think of a lot better things to do with the money each month, but I don't think that is what makes it so hard. I simply think it is the fact that I HAVE to take it. It's a little ridiculous. I am praying that I can let go of that and focus on the positives, the fact that I am overall healthy and that I am able to live independently and work. Many people who suffer from seizures cannot say the same. Their seizures have truly changed their lives, causing brain damage or emotional damage because they cannot cope with having them. Sadly, seizures can cause embarrassment to some people because of what they cause the body to do and because of the fear others have of seeing them.

I believe that as much as I do not like the news I got today, God must have some purpose, so I pray that I will be open and attentive to be used by Him in whatever way He wants to use me . . . in regards to my epilepsy and every other aspect of my life!