I was diagnosed with
epilepsy, a
disorder of the
central nervous system,
when I was eleven years old. I was on medication until I was
seventeen, and I went off the meds thinking my condition
well-controlled - until I had
seizures again in my young adult life. The seizures I had as a child were
atonic and
absence/petit mal seizures. I had
complex partial seizures
as a young adult. Even though I've been seizure-free since August
21, 1995 (touch wood), I know that epilepsy isn't curable. I
wrote the story about my experiences with epilepsy for my college
senior thesis, and it's posted on another
website. I wear a
MedicAlert© bracelet, and I give the following instructions to those who interact with me on a regular basis:
- Don’t panic! Douglas Adams’s
advice is good for any situation, seizures especially.
Unfortunately, few colleagues in state civil service know who
Adams was.
- If
I have the chance to warn you, I will. Unfortunately these
seizures don’t give me as much warning time as I had before.
- Note
the time (duration) and any unique occurrence (twitching, eye movement,
etc.). These are very important pieces of information used in diagnosis and prognosis.
- If I fall, try to ease me to the ground and point my face downward in case of emesis. It is not necessary nor recommended to try to catch me–just help me so I don’t injure myself.
- While
I am unconscious, there is no need to hold me down or put anything in
my mouth. I may twitch, but it is unlikely that I will move
around. I cannot swallow my tongue; putting something in my
mouth would probably injure me rather than help me.
- Let the seizure run its course. There is nothing you can do to stop it.
- When
I regain consciousness, I may be disoriented. After my last
seizure, the first question I asked Brian was “Where am I?”
Please answer any questions I may have.
- I may be tired or thirsty. Please understand my needs and help accommodate them.
- It
is not necessary to call an ambulance. Usually I will only need
these few first aid techniques described here. If, however, my
seizure lasts more than five minutes, or I have repeated seizures one
after the other, then send for an ambulance. This may be a
condition called Status Epilepticus, which is very life-threatening; it is also very rare.
- People
may stare, offer help, or just ask stupid and/or embarrassing
questions. My advice: accept the help with grace, the
stares with dignity, and the questions with humor.
Thank you,
-Lori