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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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May 3 – Disability Hearing

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After two years since moving to Humboldt, I finally had the hearing for my Disability claim that I’ve been working on since 2014 on this round, and since 2006 in total.

It’s taken so long, in part, because I did not have doctors who understood what was going on. And also the constant changing of doctors. I didn’t have a set diagnosis, but this time we do: Conversion Disorder and Psychogenic Non-Epileptic Seizures.

With my not being physically able to remain on task due to anxiety and my body reacting in myoclonic seizure-like convulsions, the vocational specialist flat stated that there would be no jobs within the US that I could perform. So this gives me some hope that it may finally get approved after these 12 years of fighting.

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I know when briefly browsing this site, my other websites, perhaps even my YouTube, it looks like I can do stuff, but when you look closer at the dates of posts, or if you could watch my trying to type this, having had three episodes of being spasmed flat to my bed for a few minutes each time, so far this post, it starts to make sense why I can’t actually do this professionally, for someone else. I can put stuff together for me, but a client or employer requires deadlines and reliability that I am not able to meet. And it’s taken me 11 days to post this.

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Depakote, Tegratol, and Keppra

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After the failure of Lamictol, we began trying other anti-epilepsy medications….remember, my neurologist said I that I didn’t have epilepsy, but couldn’t come up with an alternative diagnosis.

I don’t remember the exact order of these three, but they did overlap, and it was nasty.

My knees got weak, I fell asleep in classes, I was angry (though still controlled, didn’t quite have the full Keppra Rage).

I started using a cane just to keep myself off the ground.

After a few years of these, and one or two others I can’t recall by name, I gave up on pharmaceuticals as a treatment for my seizures sometime between 2006 and 2009, I don’t remember when exactly. I started feeling much better once I was off the pills.

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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.

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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.

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The Purpose of this Website

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Since October 2001, I’ve had a seizure disorder, I’ve spent many years dealing with my body and with doctors, and most of it has been frustrating.

As we enter into February 2018, I’ve decided that I need to get everything organized, share my stories, in hopes of it helping someone else, or even helping me with either getting Disability or support from others.

My plan for this will be to think back to as many events as I can remember and distinguish and write about what those events felt like, what was going on before, and what was going on after. I will also discuss interactions with medical personnel, the good and the bad. I will also share advice that has been shared with me, things that I have yet to try, and things that I have found to be successful.

It will certainly take quite a while to post things, and due to current seizures, and attempts at Living when I’m not convulsing, I might not update regularly, but I will try.

Thanks for visiting my website, check out my posts and if you can Donate, I would be very grateful. Large donations will be rewarded with original stickers or 8×10 prints from my photography website.