Thursday, December 30, 2010

med trial

one of the reasons i need to be in a hospital is for a med trial. i mean, obviously my mood swings have degenerated to the point that i need to be in a hospital for some decompressing which happens periodically every half dozen years or so even under good management (a lesson we have leaned kind of painfully over many years) but we can't try out meds on me unless i'm an inpatient.

it's just too dangerous.

the reason i'm in the fix i'm in is that there are some very good and effective meds that i just can't take anymore because after a couple of years of taking them, my body rejects them. this actually is not uncommon. psychiatric meds (and other meds used to manage chronic conditions) often run their course and outlive their usefulness. then you stop taking them and look for something else.

my case is slightly unusual in that the meds don't just stop working for me; my body rejects them in grand style. we do not part on friendly terms. it involves anaphylaxis, or stevens-johnson syndrome, or some other such thing. sometimes just starting a new med is a white knuckle ride, and no doctor in her right mind puts me on a new med on an outpatient basis.

so it turns out that n the time since i was last inside, three new drugs were developed that were available for me to try. one was a close relative of a drug to which i was already allergic, so that was already off the list. one was a promising new anti-psychotic with mood stabilizing properties and low incidence of side effects, so we started that one.

now, we purposely do not educate me on the possible but rare side effects of new drugs precisely because of both my history and my suggestibility so that IF those side effects show up, i won't have been looking for them.

so somewhere in the Indeterminate Time we start the new med. i don't feel very different. it must be at least saturday the fourth because it's not my first day in the caf and i'm used to eating there but it's still special feeling to me and i'm having trouble really enjoying the food and trouble swallowing it really, as if it gets down my throat just fine but then gets hung up just above my stomach as if those muscles just don't go right and i'm kind of uncomfortable and i'm not breathing well but my lungs are clear so it's not at all like asthma, ust like my muscles there won't really work, like that strider reaction felt sort of all those years ago before it realy got going only my tongue isn't swelling and my jaw isn't pulling and i'm trying to read and i can't make my eyes scan the page and i'm trying to do a crossword but i can't make my eyes focus on the page and they keep getting across mixed up with down even though my mind understands it and maybe this is too much for your dainty eyes but when i first came in i was constipated four days which isn't unusual when i get to one of these places but my bowels had just started moving again and now they had just come to a halt. it was like muscles in my body were just going on scattered strikes and there was nothing i could do about it.

and when i came in my blood pressure was pretty much an even 120 over 80, give or take a few points. that's the way i am. it was now 160 over 90, give or take.

afternoon and i was still uncomfortable, but the group that was allowed to go to the pool room went to play pool (more about this elsewhere). it was a happy, golden psychiatric hour (forty minutes). and i was still uncomfortable, but the wost of it was over. by four o' clock i was nearly better.

at five thirty i took another dose of the med.  all night i lay awake, feeling like i couldn't breathe. there was no comfortable position in which to sit or lie. i tried to drink water, but it didn't make my throat calm down. somewhere in the night i felt better and fell asleep.

in the morning i took the med again. we went to by lunchtime i was already having trouble controlling the muscles of my face. i was hungry, but eating was a nightmare. i had a hard time swallowing; it was hard to choke the food down. i felt heavy; food was not moving through my bowels. my chest was constricted even though my lungs were clear. did you ever have anything too tight around your neck? put your hands around your throat and grip hard and then try to eat. it was like that.

i kept tryign to explain it to the nurses like the beginning of that allergic reaction i'd had when i had the strider reaction, because the beginning of that had felt just like this, only that had progressed to a swollen tongue and this wasn't doing that. i tried changing position. i tried doing yoga. i tried deep breathing. i tried just distracting myself. it was hard. i couldn't keep control of my muscle movements enough to do anything comfortably or reliably. there was only sitting or pacing sort of agitated.

oh. and my blood pressure over those days was a consistent 160 over 90.

no sleeping. no reading. no doing anything. i talked to david the sunshine med nurse (more about him later, maybe) and it turns out that failure to control those muscles and spasms of those very muscles are rare but well-known side effects of this drug. there is another drug that they might be able to give me that might counter that side effect but that's only a "might" and you have to understand that it's sunday afternoon in a large hospital and that order would have to come from the DOC or Doctor On Call and not my regular doctor and that might take a while AND that given my history of allergies in the first place it is a crapshoot whether or not i will have a reaction to that second drug that may or may not work at all to counter the effects of a drug to which i am already having a very unpleasant reaction and my body is already sensitized and it's SUNDAY AFTERNOON AT FOUR O'CLOCK and i'd better decide soon because they're going to want to feed me my next dose of hell in a paper cup at five thirty.

now, torturers know that torture is not effective because of the pain it brings. torture is effective because of the promise that the pain is coming back. my pain has come on and crested and waned and come on and crested and waned and i have just figured out what has in fact caused it and i'm just out from the worst of it and they're about to give me the next dose and i'm willing to take more of this stuff if i have to but IT'S SUNDAY AFTERNOON and i think that really what i'd like to do before i ride that hideous wave again is talk to my doctor about it and if she still thinks it's a good idea i'll do it again but if it's all the same to you guys i'll just take a little break until i've talked to her, ok?

and of course if they get the DOC to order up that other med to give to me i'm all set but if i just wait until tomorrow to talk with my regular doc instead of a night in hell they have to write REFUSED in the book and i'm de facto noncompliant in the book because them's the rules, a thing i only mention now because it'll come up later in the story about the sneak attack secondary diagnosis.

so a few hours later i have control of breathing and swallowing and can focus my eyes and am having bowel movements and for most of the rest of the duration of the trip my blood pressure returns to 120 over 80 (except for one entertaining interval i will  tell you about later) and on monday my doctor comes in to talk to me and she wryly looks over the charts from the weekend and says "i guess we add that one to the list of meds you can't take" and she starts to figure out what to do next, which is kind of what i expected she would do, since she's a competent professional, but it was a hell of a weekend.

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