I had every intention of updating this blog every time that we experienced the ripple effect this seizure condition, but it probably won't happen that way. The mental and physical exhaustion that comes with having seizures tends to wipe us out for a few days, and often leaves me in tears. Three years later, and I'm blubbering like a baby.
Generally, Adam's seizures happen during the night. Often, we can identify a trigger, but sometimes we can't. He wakes me up when they start and I go into Seizure Control-mode: I turn on the fan, pull the dog away from him (in case he kicks, also to cut down on body heat), pull the covers off, remind him to breathe, and get a wet, cold washcloth for his head.
It's over within a few minutes, sometimes closer to fifteen. Those are the hard ones... the ones that last a long time, while he's whining and crying and hurting. Those are the times I cry.
But there's so much more that happens, even after the physical seizure is over. Generally, he'll be able to calm down and relax back into sleep. I lie awake most nights, trying to turn off my brain. Since Adam doesn't work, he can usually sleep in the day after a seizure. I have to get up at 7:00 am the next morning, whether we were up late or not. This usually leads to me oversleeping.
Each time this happens, it's as if we each get a slap in the face that our lives will never be normal.
This is the "collateral" part of the seizures. Much like the seizures can't be controlled, the ripple effect reaches all other parts of our lives.
I know that I signed up for this. I was only dating Adam for for a couple of days when he revealed the life-altering story that left him with this condition. Maybe he told me to warn me, so I wouldn't be caught off-guard when it happened. And since then, it's been Adam and I Against The World.
And so that's why, even though some days I go into work bleary eyed, tired, I know that Adam has gone through so much more- and I know that we have to find a cure, Adam's cure. There's not a cure to fix everyone, but there's gotta be a perfect combination for him, and I WILL find it, because I believe it's out there.
Sunday, August 12, 2012
Sunday, July 22, 2012
Welcome to Seize the Day!
Hello, and welcome to Seize the Day. We are Adam and Laylan, a twentysomething couple living in the Midwest. We have started this blog to attempt to chronicle and unravel the mystery of Adam's epilepsy which he has had since he was sixteen years old. To have a full view of where we are today, we should go back to the beginning...
Adam is the youngest of four children born to a college professor father and a music teacher mother. On June 2, 1994, a dump truck collided with their car on the passenger side. Adam's mother passed away instantly, and Adam was trapped in the mangled car as he was sitting behind her. He was in a coma for five days and was diagnosed with a Traumatic Brain Injury. As he was only eleven years old, no one was sure the impact that this injury would have on his life.
When Adam was 16, he experienced his first seizure. His seizures vary from mild to severe and are classified as post-traumatic stress, clonic seizures. (I've seen them also called grand mal seizures, but I don't think he fits that completely) Adam is 100% conscious during the seizures, but has jerky convulsions, "lightning bolt" pain, headaches, and his body temperature rises. They can last anywhere from 3-20 minutes. We treat them with cool air, cold washcloths and breathing exercises.
When I met Adam in 2009, he was having seizures weekly. He was also smoking cigarettes and drinking beer nightly (it was summer!). As we started dating, both of these behaviors decreased, and so did his seizures. I also read online that potassium helps with seizures so we introduced potassium supplements to his daily pill regimen along with Carbamazepine and Zonegran. These lifestyle changes have attributed to a reduction of the seizures to only about one per month or less. (For awhile we were six plus months seizure free!)
Sometimes, Adam has seizures and we can identify the trigger. It can often be cigarette smoking or drinking if he's gone out with friends. It could be if he's eaten too much and his stomach isn't feeling well. It could be being jarred from a dream. But other times, there is no trigger that we can identify... which is why we've started this blog. We hope that we can chronicle and reach out to the traumatic brain injury and epilepsy community to share questions, praises, triggers, and solutions. I've been so frustrated with the lack of information related to seizures and TBI's online- I hope that we can bridge the gap together!
I hope you'll join us for this journey- I dream of the day that Adam can go years seizure-free.
Adam is the youngest of four children born to a college professor father and a music teacher mother. On June 2, 1994, a dump truck collided with their car on the passenger side. Adam's mother passed away instantly, and Adam was trapped in the mangled car as he was sitting behind her. He was in a coma for five days and was diagnosed with a Traumatic Brain Injury. As he was only eleven years old, no one was sure the impact that this injury would have on his life.
When Adam was 16, he experienced his first seizure. His seizures vary from mild to severe and are classified as post-traumatic stress, clonic seizures. (I've seen them also called grand mal seizures, but I don't think he fits that completely) Adam is 100% conscious during the seizures, but has jerky convulsions, "lightning bolt" pain, headaches, and his body temperature rises. They can last anywhere from 3-20 minutes. We treat them with cool air, cold washcloths and breathing exercises.
When I met Adam in 2009, he was having seizures weekly. He was also smoking cigarettes and drinking beer nightly (it was summer!). As we started dating, both of these behaviors decreased, and so did his seizures. I also read online that potassium helps with seizures so we introduced potassium supplements to his daily pill regimen along with Carbamazepine and Zonegran. These lifestyle changes have attributed to a reduction of the seizures to only about one per month or less. (For awhile we were six plus months seizure free!)
Sometimes, Adam has seizures and we can identify the trigger. It can often be cigarette smoking or drinking if he's gone out with friends. It could be if he's eaten too much and his stomach isn't feeling well. It could be being jarred from a dream. But other times, there is no trigger that we can identify... which is why we've started this blog. We hope that we can chronicle and reach out to the traumatic brain injury and epilepsy community to share questions, praises, triggers, and solutions. I've been so frustrated with the lack of information related to seizures and TBI's online- I hope that we can bridge the gap together!
I hope you'll join us for this journey- I dream of the day that Adam can go years seizure-free.
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