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.
Anonymous( )Anonymous This account has disabled anonymous posting.
OpenID( )OpenID You can comment on this post while signed in with an account from many other sites, once you have confirmed your email address. Sign in using OpenID.
Account name:
If you don't have an account you can create one now.
HTML doesn't work in the subject.


Notice: This account is set to log the IP addresses of everyone who comments.
Links will be displayed as unclickable URLs to help prevent spam.


saavedra77: Back to the byte mines ... (Default)
Anthony Diaz

December 2014

14151617 181920

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Sep. 23rd, 2017 06:08 pm
Powered by Dreamwidth Studios