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Thursday, February 26, 2015

Seizure News

Some good news and bad news:

Bad news: I woke  up at about 5:30am Tuesday morning during a seizure. The first thing I felt, before eve trying to sit up, was my hand doing its thing - squeeze then relax, repeat the process for however long it wants. About 15 minutes in I took an Ativan (which is supposed to stop the seizure and knock me out) and no change. Another 15 minutes and I took another Ativan. Still nothing. Since the bottle says "take 1-2" I figured it is now time to go to the hospital.

I live right almost directly across the street from the hospital (I'm set back a bit in an apartment complex,) but with the cold weather, and 2 Ativan in, I decided that walking down slippery outdoor steps and across a street while groggy and seizing was not a good idea. I didn't wan't to pay ambulance fees if I didn't have to, since it wasn't a dire emergency, so I had my mom come get me. It was probably about 7ish when we got to the hospital (time is relative since I was drugged up and my mind was literally fried.)

I spent roughly 8 hours in the hospital having seizures for roughly 3-4 of those hours. They gave me an EEG during one of the seizures and the results somehoe came back "normal." Again. I asked over and over for food, but they didn't bring anything until 1pm, so the last time I had eaten was probably 6ish the night before. Now that I think of it, I don't think I ever got my morning meds (or maybe they gave it to me at the hospital and I don't remember.)

I don't remember most of the rest of that day except my mom taking me back to her place, eating McDonald's, hating her dogs for waking me up continually, then going to bed at like 7 (ish of course).

The next morning, I woke up around 6 so that my mom could go to work and I could decide whether or not to go to work. It was indisputable "no," so I spent most of the day sleeping. Today tried to go to work, was there like 2 hours and had to come home. After some sleep and still feeling like crap, I got up and had some lunch meat to eat. Suddenly I felt a lot better. I then had some Goldfish crackers, a pop-tart, and a bowl of cereal. Felt a little better still.
I thought back at what I had recently eaten - sandwich at 1pm Tuesday, McDonald's 4pm Tuesday. Eggs and toast 6:30 am Wednesday, A sandwich and snacks most of the day Wednesday, a small "dinner" at an Al Sigl event Wednesday night, and pretty much nothing this morning - a granola bar and a cinnamon bun - because I didn't have much time to eat breakfast. So it made sense that food made me feel better.

Good News: I left one part out of this story: this morning.

Yesterday my doctor called and scheduled a follow up to the ER visit; That appointment was this morning. I talked to the doc, he asked me about the EEG and I said that the ER said that the results were normal. He mentioned that he had received the same info. We talked about the med changes that I've been going through, and decided we that the Keppra (that I just got fully weaned off of) was not helping. I was on such a small dose over the past month that it would have no effect. The only reason I was still on it was to not cause my body to go through shock from withdrawal.

After talking about the medicine, we went back to discussing the EEG. He mentioned that since this is the second time that this has happened, my seizures are probably drug resistant; meaning that no amount of medicine is going to help.

He then told me that he is going to refer me to the Strong Epilepsy Program, which is pretty awesome. He said that they can talk to me about non-drug related treatments, and since they are constantly researching over there, they may have some cutting edge tech. The only small issue is that I'd have to pay for parking, and I hate that. But the benefits of possibly getting more control highly outweighs a small cost of parking. I also won't be seeing my current doctor anymore, which is kind of a shame because I liked him as a doc.

I should hear from Strong within 1-2 weeks, and they will setup an appointment with me. I can't wait to see an epilepsy specialist and see what the next step will be :-)