11:07am May 27, 2012

I wish there were ways to describe this other than feeling weird.

I feel much less weird than before. But I still feel weird. I got distracted the other day, when my parents called, and ended up eight hours late on my seizure meds. I don’t remember a lot between then and now but I know it was seriously unpleasant. To make up for it without overdosing or going into withdrawal (seizure med withdrawal is seriously dangerous) I had to skip my morning dose and take my night dose a couple hours early. I think my neurotransmitters are getting back on track, but the world seemed very strange for awhile.

And yet if I am unable to keep down seizure meds, it’s really hard to persuade the hospital that it’s even an emergency, let alone that I need to be hospitalized and given IV Keppra until I get better.

I still remember this horrific experience when I was already hospitalized for a blockage that had slid into a position where it blocked my bladder too. I was delirious and vomiting constantly. So they knew I belonged in the hospital but they didn’t bother replacing any of my meds by IV.

So my experience at the time was basically that I would randomly pass out and wake up in different parts of the hospital where they were running tests on pretty much everything. Only normally when you pass out you don’t wake up clutching the bed rail with all four limbs while a technician tries to pry you loose. And when I was awake, I was hallucinating all sorts of creepy bouncy stuff moving to saccharine music in a nauseating way. And time was in an endless series of loops that repeated in an almost fractal sort of way.

I was rarely in good shape to type. But apparently when a friend visited I spent hours unaware of her presence, waving my fingers at the ceiling (I vaguely remember the ceiling having pastel shapes dancing all over it, and the room looking ornate and Victorian), and then looked at her and typed “Why are you repeating?” At which point her response was to run off and demand seizure meds, which they settled on Ativan for at the time. I was still delirious after that but time quit repeating. Without her I don’t think they’d have clued in until I was having constant obvious seizures, and maybe not even then.

Things like this make it obvious why the death rates in hospitals are so high.

Another time I’d had to get bounced in and out of the ER several times by people who didn’t think being unable to keep down seizure meds was an emergency. Then waited twelve hours for a room, while they repeatedly asked me if it wouldn’t be easier to go home. Only to have them force me to try and eat at the earliest opportunity. It all came out really spectacularly. And then try to discharge me after threatening to give me a suppository of a drug my chart said I had a life threatening allergy to. (The threat came after I refused to take a pill.)

The attempt to discharge me was because “we aren’t giving you any real treatment here”. Because apparently IV seizure meds didn’t count as treatment. Plus the hospital was full and when they’re full I’ve seen them discharge entire wards at once by declaring very sick people to be recovered. But when they do that they’re mostly hoping the patient won’t fight back. My friend contacted Patient Relations and suddenly the doctor decided to keep me until I was better, which wound up being a week.

At this point my doctor has all kinds of information in the system about how much Keppra to use and why they need to keep me there in the event of lots of vomiting. And they’ve found nausea meds I am not allergic to. Which have kept me out of the hospital for the most part.

But it seems very weird to me that seizure med withdrawal isn’t something they take seriously given how dangerous it is. And that they don’t consider IV seizure meds to be a medical treatment. I’ve heard similar stories from other people at this hospital.

I still can’t put a finger on what feels weird now. It’s subtle but it’s there.

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