learning what to do

I remember one particular seizure in college that started teaching me how to deal with my non-epileptic seizures.  

At the time, my college shared a building with a church. There was a full sized couch in one of our practice rooms (it was a music college) that doubled as a nursery. I often went to that room when I felt a seizure coming on so I could lay down safely and not repeatedly hit my head on a hard floor. 

This particular day my blood pressure tanked out of the blue during my seizure. So I was laying on the couch, completely paralyzed and lightheaded, with beads of sweat lightly covering me. My heart rate dropped and I remember asking God to kill me right then and there. I was ready. I was so tired. 

Very clearly, it was like someone whispered next to my ear, "not yet." I remember crying angry tears then. It was all I could do. Then someone found me, turned on the light, and asked if I was ok. I couldn't answer but for a few quiet, stuttered words. I couldn't move. They were joined by another person and they stayed with me for probably five minutes. I don't remember what they said really, but those five minutes were the sweetest comfort I could have been given in that moment. When they left, I think I fell asleep and woke up a little while later in recovery mode. The aftermath is always painful and wipes me out for the rest of that day (at least - sometimes for longer).

What hurts the most about having NES is that it scares people. It scares them often to the point of not wanting to hang out with me for fear of witnessing another one. When I collapse people stare at each other, waiting for someone to know what to do while my head bounces off the ground or I lay unable to move or speak. I can't ask for help. I can't tell anyone what to do. I've learned that I have to try and make sure that at least one person with me at any given time knows what to do in case of a non-epileptic seizure.

1. Please don't leave me alone.
2. Please don't ask me questions or talk at me. I can't answer you. 
3. Move me onto my side if I collapse on my back so it is easier for me breathe. 
4. If I'm on hard ground, see if there is anything soft to put under my head (like a bunched up sweater or a pillow).
5. If I am somewhere inconvenient and in the way, you may have to call an ambulance to move me somewhere safe until it's over (I do not need to go to a hospital). Paralyzed and/or convulsing bodies are heavy and very difficult to move without a stretcher and multiple people so please do not try. If I collapse somewhere that does not obstruct everyone's path, I'm fine there until I have a little more motor function to help you move me. 
6. If you feel like doing more and my arms are convulsing, squeezing/massaging my exposed shoulder (assuming I'm on my side) will force my body to communicate that those muscles need to relax. It won't stop my seizure but it will help the spasms in that arm. 
7. I'm going to feel like I just ran a marathon afterwards and have some motor function and speech issues. The best thing anyone can do for me is make sure I can go somewhere and sleep safely afterwards. Get me a ride home for instance. 

Remember, if you know someone with NES, just sit calmly nearby if no one else is. Being there (especially when it's over) is the best thing you can do. 

If you have NES like me, maybe this will help you tell your friends and family how to help.

Hope this helps you,

Kelly Ann