Daily Living With Epilepsy

My husband has had epilepsy his entire life and I like to share a few interesting facts that we learned together over the years.

The first being something we learned several years ago when he had to switch neurologists because of a new medical insurance/health provider. His entire life, until then, he had been taking 3 pills in the morning and 3 in the afternoon. The new doctor put him on a time-release medication, which helped immensely. We were surprised to learn that for the entire time he was growing up, he never had any medication before bed. By the time he got up in the morning, all the medication was completely out of his body.

He now takes 3 pills when he first wakes up and 3 pills just before he goes to sleep. The medication is constantly in his system and has made a world of difference.

Some of the things we learned might be helpful to others.

• When he wakes up first thing in the morning, his brain needs a good hour to wake up. He discovered that energy drinks helped first thing in the morning. We recently tried having him take an Airborne every morning and it definitely helped.
• The first hour he's up there can be no noise: water running, talking, the dogs barking, TV, or radio.
• Sleep to him is very important. He needs at least 8 hours of sleep. Sleep is almost like a required medicine and there's a noticeable difference when he lacks sleep.
• When he's sick and running a fever, he has little seizures.
• He's very sensitive to lights. We have lamps, overhead lighting causes him to have seizures. When he's outside, he wears dark, aviator sunglasses that we bought at an Army surplus store.
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• If he sees light coming in from a window first thing after he wakes up, he will have a seizure. He gradually adjusts to the light, but there is no waking up and going outside to get the morning paper or having the blinds/curtains opened first thing to let light into the bedroom.
• He won't go to Walmart because the humming of the lights in their ceilings affect him. Also the Blue Light specials in Kmart affect him, as well. Red flashing lights also have the same effect.
• If a police car speeds by us with all it's lights on, it doesn't affect him. If we're stuck in traffic really close to flashing emergency lights (depending on the brightness and how fast they're flashing), they can have an effect on him.
• Screaming toddlers and children do affect his senses such that if we're in a restaurant and there are crying toddlers, we asked to be moved or just have our food boxed up and leave. Sometimes we get dirty looks from the parents of the screaming kids, but they have no way of knowing he has epilepsy and it's more of a problem with the sound and pitch frequency.
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• I don't know why, but he needs to have a lot of room over his head (8 foot ceilings or more) and he doesn't do well in small bathrooms. We haven't figured out why, but he needs to have space around him.
• In the bathroom, all his stuff needs to be in the exact same space every day. When he first wakes up and gets dressed for work, his brain isn't really up yet and it's just so much easier for him to have everything in it's designated place.
• He also can't function in a room that is cluttered, it's almost like his eyes are always scanning the room to make sense of it all.
• We also learned that he needs to keep regular and takes 3,000 mg vitamin C in the morning and 3 again at night. He also eats a lot of green vegetables. Eight out of ten times if he has a seizure it's because he's constipated. It is very, very important for him to go every morning, like clockwork.
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• If he's actually having a seizure I throw a towel over his head to block out any light and get a couple of packs of frozen peas that I place on his chest because he gets really hot.
• Also one of our three dogs will go to him if he's having a seizure and just sit with him. Petting her seems to calm down his senses and brings him back to reality.
• He's been driving for years and if he even gets a hint that he might have a seizure or had one and isn't physically able to drive yet, I drive him to work. By the time I get him to his job, he's fine, he just needs a little more time for his brain to sort things out and the rest of the day he's perfectly normal.
• When we go to a movie he can't walk from a dark theater out into direct sunlight. We also don't go to concerts because it's just too stimulating for his brain.
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• I once asked him what it was like when he was having a seizure and he described it as a bad lighting storm in his brain. Also he is literally blind while having it. He may catch a small amount of light, slipping through the window and he will be drawn to that light over and over again, twisting his head in all sorts of weird angles to see it. Afterwards his eyes are sore and depending on how long the seizure lasts his neck might hurt.

Many years ago while working, I got into a conversation with a woman who had a young daughter who had epilepsy and I actually dialed my home phone number and let her speak to my husband. She didn't have a clue about waking her daughter up slowly or opening up all the curtains in the child's room and letting all the sunshine in.

I also don't panic, my husband makes this noise when he's having a seizure and when I hear him doing it, I get up, get my peas and within 3-5 minutes, it's done and over with and he's getting dressed for work.

Over the years we've tried different things and I'm just sharing what we found to work at least for us. There are different kinds of seizures and I know 100% at least in his case, that light, noise, lack of sleep, and being constipated definitely does affect him.

By CPJ from Madison, AL