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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.

Featured Posts

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.

Seizures

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.

Seizures

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.