I was inspired to search for pain related seizures once again after watching a movie dedicated to a woman who died from something known as Long QT syndrome ("P.S. I Love You" was the movie, btw - I highly recommend it). Symptoms of the syndrome include fainting, seizures, and sudden death; these are all caused by a heart arrhythmia that is usually genetic. I've never been diagnosed for my seizures, but reading about this syndrome made me wonder if it might not be a possibility. If not for me, then maybe at least for one of you out there struggling with the same problem.
In my case, I had one seizure before I was old enough to remember it and wasn't taken to a doctor then. When I was 6 or so, I hit my hand on a doorknob, triggering a seizure and my parents rushed me to the hospital, where I was evaluated, but nothing turned up. At 7, I slammed my finger in a heavy door and seized in class, causing another visit at a different hospital. During these two years, I had numerous MRIs and an ECG. Nothing. Since then I have had seizures caused by hitting my elbow on their floor, hitting my elbow on a floor vent, falling down the stairs, after giving blood (to be fair, I was a little under the weight limit) and after bringing the soft spot below my knee on the edge of a metal bed frame.
In addition to those verified seizures, I once passed out after running to catch the bus and I had a very strange incident, where after falling repeatedly and scratching up my hands while ice skating, I felt the prickly feeling that comes before the seizure and sat down only to have my vision go slightly blurry (as happens pre seizure) and my hearing to fade to the point that I only heard the barest hum of noise, despite being in a rink full of people, seated next to the loudest piece of machinery imaginable, with someone yelling my name right beside me.
The hearing incident scared me the most, because that is the only time that's ever happened. But the next seizure after that, the last one I've had, I tried to prevent the seizure by focusing and breathing deeply (which has been known to work in the past), but I still felt faint after some time. I went downstairs to get a glass of water, hoping that would help, when I was overcome by tiredness. I remember lying down right on the kitchen floor with my cup next to me. When I woke up, I was on my back, covered in water, with my parents over me. This time I was "awake" for a good five minutes, trying to communicate, before I could even raise my arm. It took me three tries to grab hold of my mom's arm. After that, I was much clammier, shakier, and more tired than I've ever been after a seizure. I went right to bed and slept for hours. That was about 4 years ago and I am terrified to have another for fear that it would turn out worse than that one.
I haven't seen a doctor for this since the first times when I was young. After the last seizure, I wanted to see one about it, but I was just then old enough to drive and my mother told me they wouldn't let me have my license. I am too scared to mention it now knowing that the doctor probably wouldn't be able to help anymore than before and knowing that I would hate to be misdiagnosed with epilepsy (having my license (and thereby my freedom and ability to make a living, essentially) taken from me for something that I know doesn't occur randomly (making it so that I am not a danger on the road)) and not have anything done about my real problem because of a false answer. And, of course, I don't have health insurance, anyway...
I'll be checking back to see what others are experiencing and learning. Hoping for the best for all of us!