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Seizure Streamed to YouTube Live

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I managed to start a YouTube Live Stream as I was between seizures. I thought about doing it as I felt the seizures starting, but didn’t quite get all the way loaded, as I also took the time to clear my computer off my bed. So, when I came to and recognized that I wasn’t done seizing yet, I finished getting the Live Stream activated and then fell back into the seizure, which lasted another hour-and-a-half.

I felt ok after, a bit loopy, but back to functioning enough to finish getting ready for bed and try to get to sleep again. Yeah, wake up just so I can go to sleep. It was around 10 PM when I woke up from the seizure. Something happening outside woke me up around 1 AM, and I didn’t get much sleep after that.

Next day I woke up feeling more ok than I usually am after a long seizure spell, but too exhausted to go out during the day. Which was very unfortunate, because it was one of the nicest weather days we’ve had so far this year, and I was really looking forward to a warm Saturday on the beach. Even if my car was currently working, I don’t think I was stable enough to drive and definitely not enough to walk the mile each way through the ups and downs of the coastal trail.


Also, it’s been two months now, and I’m still waiting to hear back on Disability, I’ve checked the SSA website and that still lists as Processing. Not unexpected to me.

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First Neurologist, Medication, and Italy

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In March of 2002, I started with my first Neurologist, Dr. Mary Amir (San Luis Obispo, CA).
She gave me an EEG, and told me I didn’t have Epilepsy, she nearly referred me to Cardiology, until we told her that Cardiology sent us to her. So, she gave me an anti-epileptic drug, Lamictal…

Yup, she tells me I don’t have epilepsy, and then gives me medication for epilepsy….

So we take a family vacation to Italy, right as I’m starting the new medication. And at first, things were ok, then they weren’t.

Turns out, I’m allergic to Lamictal, and my legs broke out in rashes while we were walking around Rome, Florence, Brindisi, and Mesagna. By the time we got to Venice, I stopped taking it and the rash has subsided. But that didn’t mean Venice was uneventful.

The details that lead up to this are unnecessary, so, to the point: I was having to walk very quickly through the streets of Venice, in the hot summer of early July, and I don’t do well in heat or with physical exertion. Finally, I felt the seizure coming on, I couldn’t keep walking, got my sister’s attention, and I collapsed. She got some help and an ambulance boat was called to take me to the public hospital.

At the hospital, no one spoke English, and our Italian wasn’t quite good enough to explain my health issues. They found one nurse who spoke French, and so my sister and I spoke the French we knew to her, and she translated to Italian, and then back; it was challenging. They gave me some sort of medication, I don’t know what, looking back, realizing as I’m writing this, it could have been morphine… And so I vomited in the waiting room as my sister left to try to find our parents, and somehow managed to find her way across the city and the bay to the hotel and find our parents, and then get back to the hospital. It took four hours, and the vomit was still on the floor when they arrived.

My dad, who does speak Italian, got me out of the hospital.

I don’t really remember much of the next few days besides puking in the back of the tour bus.

Medical Personnel

Cardiology, Early 2002

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A few of the key features of my episodes were very high heart rate and low blood pressure, and since I had not lost consciousness since the first episode, the hospital and my doctor recommended I see a cardiologist, Dr. Tway, in San Luis Obispo.

I changed jobs, leaving the movie theater and then finding a job at McDonald’s.

Tway gave me a heart monitor to wear for a few days, during which I had classes and work.

We were really noticing the state of my heart during episodes, and so we did a stationary bicycle test at home. I rode for a few minutes, fairly hard, but no harder than I’d ridden a bike as a kid, and my pulse reached 200bpm.

I slowed down and tried for a cooldown instead of stopping quickly, typical recommendation for any exercise, but my pulse barely went down. After several minutes, I was still over 170, and so I got off the bike to lay down. Ten minutes later, my body went haywire, after a “sudden” drop from 160 to 100bpm.

I know I had one or two during classes at that time, but I don’t really remember them enough to write about them.

In March, Dr. Tway had me do a treadmill test in his office. Once again, my heart rate reached 200bpm. He had me slow and then stop once it got that high. And then I sat, and we waited for ten or more. Deciding that nothing was going to happen, the assistant began disconnecting the leads from the computer, and then I felt it coming.

I yelled out, reached out, grabbed the doctor, and collapsed off the patient bed and Tway helped me to the ground, the assistant frantic to put the leads back in.

After this event, Dr. Tway referred me to a neurologist, saying that it was not my heart that was the cause, but that I was having a type of seizure.

The owner of the McDonald’s that I was working at, found out that I was seeing a cardiologist, and although I actually never had a single episode while working very long hours due to the high turn-over rate, and he took me off the work schedule until I got a doctor’s note saying that I was safe to work. I did that, and he still did not put me back on the schedule, so I had to quit that job.


Third Seizure, Nov 2001

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Harry Potter was in theaters at this time, and there were lots of people going to see it.

It was an afternoon in November, and I had been working the door, ripping tickets and directing people to their screens. It was Harry Potter, and a few others, a lot of people to get through quickly, and when it finally cleared out, I took a few steps towards the bench, and down I went.

Looking back now, I don’t remember too much of it, but I was out in the open, and my coworkers saw me collapse.

Once again, I was fully awake, convulsing with all my muscles clenched, curled up in the fetal position, in silent screams of agony.

Once it was over, I rested for an hour in the break room before going home.


My Second Seizure, late Oct 2001

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It had been a couple weeks of feeling ok for the most part, but then it happened again, and this time, I was awake.

It was in the evening, and I was working at the movie theater, this time on the concession stand. I don’t remember exactly what movies were there at this time, it was a little before the first Harry Potter and before A Beautiful Mind, but it was something big playing, and we were busy. Really busy.

It’s a surprisingly aerobic workout to get popcorn, drinks, and candy for several hundred people within half an hour. And when it was finally done, when everyone had gone to their movies, and it was time to breathe, I was exhausted. I started to walk towards the backroom to get my cup so I could fill it up with water, but just a few steps and I collapsed to the ground, unable to move.

I laid there for a few minutes, trying to get some sort of control of my body, to get it to move or do anything. Then I started spasming, and all my muscles contracted. I was curled up in a ball, convulsing, in a world of pain that I had never felt the like of before, and nothing since compares, not even kidney stones, the closest thing would be a taser.

After another few minutes, what seemed like forever, someone looked over the countertop and saw me on the floor writhing.

I was burning up, sore, my jaw was tingly and numb, and my heart was pounding.

By the time the EMTs arrived, the convulsions had finally stopped. My parents arrived, and they took me into the hospital. The hospital was unsure what to do at the moment, and so I went home and we set started setting up further doctor’s appointments.

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My First Seizure

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October 10, 2001

My life has changed.

I had what we believe was a seizure while working at the local movie theater.

The day began at 4 am, and by 5 am I had arrived for my third day of work, first full shift, at UPS unloading trucks, until 9 am. It was exhausting.

After work I went home and started doing some work on my “new” car. I grabbed a packet of strawberry frosted Pop-Tarts and began work detailing that which the dealership hadn’t cleaned perfectly.

That afternoon, I went to work at the movie theater, that night’s job would be cleaning after the shows.

I was cleaning up after The Others, and had just finished and started walking back up the aisle. I was not feeling well and was thinking about taking an extra break or even seeing if I could go home early. Then darkness.

Next thing I knew I was laying on the floor looking up at the lights on the ceiling, in a world of pain throughout my body.

I lay there, barely able to move for a few minutes before two female coworkers came in apparently looking for me. They had concern in seeing me on the floor, half dazed, and said I’d been missing for over half an hour; I did not think I had been cleaning that screen for nearly that long.

But we figured I’d just fainted/passed out, and I went home.

The next day I was still sore and exhausted, so I told UPS that I would not be continuing.