Seizures Upon Awakening

I just wanted to share my experience of my form of epilepsy with everyone.

Around ten years ago I was hit by a car as a pedestrian. There was damage and slight bleeding on my spine in the back of my neck region. The doctors as the hospital were telling my family to say goodbye as they didn’t think I would survive. My head was swollen nearly twice the size. I wasn’t responding to needle pricks. Over the course of a week I recovered and was eventually sent home.
One of my follow up appointments a month after I was filling out paperwork in the Doctors office and ended up having my first Tonic Clonic on the floor. They put me on Dilantin/Phenytoin. They said it could have been a one off and might never happen again. I wish that ended up true..
I decided to use my downtime to do some college courses 5 months later. One morning I was on my way to class and had a seizure while driving. Minor damage to myself, totaled car, no one else involved.
It’s been 10 years now and I have had many seizures and have finally put enough pieces together to understand what sets them off and how to avoid them for the most part or how to sense them so that I can be safe until it passes.
I’ve self diagnosed myself with a form of Nocturnal Seizures. Every single seizure I have had only happens within 1-2 hours of waking up. Time of day doesn’t matter. In order for me to have a seizure the following conditions must be true:
- Have over exerted myself physically the day before, such as hard physical work out in the summer heat to the point my body is somewhat exhausted. High physical activity.
- Wake up without an alarm slowly waking me up before I actually get up and move around. For example, I set my alarm for 5am, and I hit snooze until around 7am. This seems to allow my brain to be awake fully before I start walking around or doing anything that requires my brain to process anything. If I just sat my alarm for 7am and got up and started walking around it would almost guarantee a seizure.
Generally if both of those conditions aren’t met, I don’t seem to have seizures. Although the alarm is vital regardless, being exhausted just seems to increase the odds the seizure will slip through.
Lucky for me I also have what I call auras. For everyone who has auras they can be different. For me, it’s a slight jerk in my neck. I call them tics or zaps. If I have these I know to lie down or sit until they go away for 10-15 mins or I will almost always have a seizure if I keep being active.
These auras and the fact that I have never had a seizure more than 2 hours after waking up (usually within the first 30 mins) makes it so that I am able to live a somewhat normal life. Driving, having a full time job, etc. The seizure's I’ve had are generally on the weekends when I forget to set an alarm and end up active before my brain is ready to process activity.
My job has accommodated my seizures by allowing me to work from home until I’ve been awake a while so that my commute is safe.
I have also noticed over the years that I can no longer drink alcohol and I have to be careful what other meds I take. Muscle relaxers and various stimulants almost always set my seizures off the next morning. Even those caffeine pills from Nutricost if I take more than 2 a day.
I take 2x 100mg ex Phenytoin before I go to sleep. I tried 3x 100mg but it made me feel drunk and dizzy so bad I couldn’t function. The doctors told me this was Dilantin Toxicity. So I lowered the dose. After all the years of taking the meds I could probably tolerate the 300mg daily but I haven’t tried. A few times over the years I have tried to quit the meds to see if I even still needed them, and every time it’s resulted in a seizure within a week or two. So I figure I’m stuck with them for life. I just hate how cognitively slow I am while on them.
I hope someone else experiencing seizures while awakening can use tips I’ve learned over my 10 years of epilepsy to help manage their seizures.