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  Queen Lori: Epilepsy

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All contents © 2011
by Brian and
Lori Ann Curley
EF LogoI 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:
  1. 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.
  2. 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.
  3. Note the time (duration) and any unique occurrence (twitching, eye movement, etc.). These are very important pieces of information used in diagnosis and prognosis.
  4. 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.
  5. 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.
  6. Let the seizure run its course. There is nothing you can do to stop it.
  7. 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.
  8. I may be tired or thirsty. Please understand my needs and help accommodate them.
  9. It is not necessary to call an ambulance. Usually I only will 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 call for an ambulance. This may be a condition called Status Epilepticus, which is very life-threatening; it is also very rare.
  10. 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

For more resources, contact the Epilepsy Foundation or a local affiliate.