saavedra77: Fits (Fits)
[personal profile] saavedra77
First, let me apologize for not updating everyone on the results of my November hospitalization. I know, I know, it's been months, and those of you who don't follow me on Facebook might have been unnecessarily worried by my silence.

First of all, I got through the hospitalization alright. Mind you, I endured the humiliation of being nearly naked all week with electrodes in my hair, wires tethering me to the wall. And I was there deliberately courting the most awful kind of experience I've ever had. In the end, however, we got the information we needed without too much of that electrocuted feeling that always comes with seizures, and without my pulling any muscles or biting my tongue.

Despite my best efforts and the help of nurses and friends, I couldn't stay awake the whole week. But the strain told and resulted in some scary moments--mostly false alarms. The most frightening moment happened when the nurses woke me one night when I was dozing--ostensibly to take my vitals, but I was there to have seizures, right? I didn't actually seize that time; I had a panic attack, which is a very different kind of experience. My heart rate shot up from 90 bpm to 120 in about thirty seconds (remember, they'd just put a a blood pressure cuff on me). I hyperventilated for a long, long time, sucking air and not getting it, until the attack passed. I've never been so scared in my life, but I knew even then that it was no seizure. My seizures always start with shock, shakes, and stuttering consciousness. In this case, however, I wasn't shaking, didn't feel like I'd stuck my finger into an electrical socket, and was fully, continuously conscious throughout.

At one point, I did have a blip of shaking, shock and slipping in and out of consciousness. But it lasted only a moment or two and I never fully blacked out or hurt myself. Nonetheless, that episode and the data gathered via my electrical tethers told my doctor everything he needed to know. By Thursday, he was satisfied about the nature of my disorder: a focal epilepsy which becomes generalized--i.e., starts from a damaged spot and spreads throughout the grey matter.

Then all I had to do was endure the roaring claustrophobia of fifteen minutes of Magnetic Resonance Imaging that I guess added a little more information. After that, I got to pull my clothes on, call a cab, and go sleep in my own bed.

About a week later, my doctor put me on new drugs, which seem to have provided much greater epilepsy control. Although sleeplessness has always been my primary seizure trigger, I find myself much less susceptible to fits even after long waking periods or interrupted sleep. I've engaged in some risky experiments in sleeplessness, since then, largely without consequences.

I did however run up against a hard limit at the beginning of January:

I was back East visiting family over the holidays, and had stupidly arranged to fly back here on New Years Day. I tried to go to sleep on returning from the family New Years party, but couldn't, at all. I left for the airport dragging but wide-awake, and stayed that way all the way to Seattle--through a six or seven hour plane ride, through baggage claim, through the twenty-minute light rail trip downtown and the two minute cab ride up Capitol Hill to my house. That was about 4:00 PM Pacific Time on January 1st, and I'd been awake since 9:00 Eastern Time the previous day--around twenty-eight hours. I would expect to at least be experiencing those disorienting little jolts by this time, but I was simply overtired. I then collapsed and slept for a good fourteen-fifteen hours. The next day, Saturday, I felt woozy but basically OK. Having started the day late, I didn't finally doze off until around midnight.

I didn't think about it at the time, but I'd probably missed two-to-three doses of my anti-epilepsy meds, during the course of all that running around and the ensuing sleep marathon.

Guess what happened Sunday morning? My first and only seizure since, November, of course. I woke to a short sharp shock, thought "Oh no ..." and started casting about for ways to avoid what I knew was coming: breathing deeply, etc. As usual, nothing worked.

The shocks became more frequent, wiping my mind clean every time one of them hit me. I did have the presence of mind to grab a pen and notepad from bedside table, though. In between shocks, I started writing out what I was feeling, and not quite coherently thinking. I guess that gave me some sort of a sense of control--at least I was doing something and not just passively enduring it. I would have some sort of intelligence to hand over to my neurologist, albeit in abominably shaky handwriting. Thinking about that--the future information sharing--also made me feel less lonely: the sense that you're helpless and alone with this thing is almost as bad as the primary symptoms.

Of course, all this was familiar to me: I've been through it more times than I could count. After awhile, you start wanting to pass out. Interestingly, the complete blackout and collapse into convulsions never came. I just sat there riding out the shakes and shocks for an hour or so until they subsided enough for me to go back to sleep.

Sounds bad, right? But the key point here is that it took a radical and sustained disruption of my sleep schedule and two or more missed drug doses to do that. In the past, all it took was staying awake for, say, more than eighteen hours or being startled awake from a deep sleep. It wasn't fun, but it was an improvement.

Now all I have to do is manage the new drug's side effects ... but that's another story.

Date: 2010-03-16 11:14 am (UTC)
From: [identity profile] feyandstrange.livejournal.com
Well, I figured if anything bad *did* happen, at least you were in a hospital, right?

Glad you're doing well and that the new meds are working out fairly well. I do sympathize with some of what you're saying about wishing you could just pass out and having done this already enough to be a bit bored with it; my migraines almost always go away if I can just pass out, but sometimes it's awfully difficult to do that. (Although my migraines frankly sound much easier to deal with than your seizures, it's still a bit similar, that feeling of not being entirely in control of an annoying bodily process and wishing it would shove off already.)

Meds management while traveling can be a hassle. That and the times when I've felt like I was going to sick up my pills are some of the most annoying. "I feel like if I could just puke up that bad burrito I'd feel much better, but I took my pills with it, and I might have absorbed some of the dose already, and ... I'll just sit here and think stomach-calming thoughts."

Panic attacks are wretched things; I'm so glad I've gotten mine controlled. Especially since the combo of panic and asthma usually makes for a heck of a lack of oxygen, but the asthma meds made the anxiety worse. Apparently there is an entire subset of anxiety dedicated to having panic attacks and hallucinations while in the hospital, possibly causally related to being in a strange place where you can't get decent sleep. I once sat with my aunt while she detoxed from kidney overload because if she was left alone she'd get hysterical and violent; she has that syndrome, and kidney-liver backup made it worse. She confided in me that she was pretty sure the hospital Quality Assurance team were in fact terrorists planning a strike, and that I should tell the police if anything happened. I've thought that was a great excuse for Quality Assurance programs ever since.

...and insomnia maketh me babble. Good to see you back around these parts, and that you're getting healthier!

Date: 2010-03-16 06:04 pm (UTC)
From: [identity profile] delerium69.livejournal.com
Oh, I didn't want you to feel bad! I was just concerned and wondered how it all worked out for you. (Which is all so funny considering we don't know each other live and in person. I have been told that I fuss over people too much.)

I assumed if something bad happened, you were in the safest place to be, and someone would have mentioned it. I'm just glad that despite the stress and indignities, the testing yielded positive results for you.

I've had panic attacks (which for me, aren't too different from attacks of sinus tachycardia.) Both suck, but are fortunately are both controlled. I'm sorry you had to experience it.

Date: 2010-03-17 06:56 am (UTC)
From: [identity profile] verbicide.livejournal.com
I get what you're saying about how much better off you're clearly doing, but god that sounds awful, and I'm sorry you had to go through it.

But I am also really glad that your time in the hospital, which also sounds frankly horrible, produced some real, measurable results.

Thank you for writing this--I'd wondered how things were, but didn't want to pry.

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Anthony Diaz

December 2014

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