There's a story here that I haven't told completely because I haven't wanted to muddy the waters or get people's hopes up for a drug that might help one person in a million. |But my esteemed psychiatrist and sleep specialist, Dr O, thinks I shouldn't be so reticent, that I should explain what happened in full, because research is still being done and who's to say what might be helpful or not in other cases of schizophrenia. So here, forthwith, is a fuller story of how I recovered.
I've said in my speeches, if you've heard them, that the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor's orders changed. That certainly stabilized me to the point where I stayed out of the hospital, though I didn't feel particularly well. Then, I finally agreed to try a drug Dr O had been pushing me to take for a year. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory was, the spells of waking dreaming would happen less often, I would need fewer stimulants, and the sleep attacks would cease...among other things. ( I realize that I haven't actually described these things, and I will have to go backwards at some point and do so, but trust me, they have been a big problem...)
Xyrem is not a drug without a difficult past. Once known as the "date rape drug" it has faced bitter controversy, even being discussed in congress about whether it had therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be to save the drug from being banned outright. So it is now available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.
It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. It's a liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice and taken just before bed. It's foul tasting -- actually on the salty side -- so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!
When I first started taking it, falling asleep terrified me, because I tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for week, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear-related than anything else. After about a month, though, I was able to take it without trouble, except for the middle of the night awakening, which bedevils me to this day...
However, the effects can be felt within two weeks if you're lucky, though it takes months for some, and for me a miraclous 12 days. My improvements had nothing whatsoever to do with narcolepsy though. Improvement in that sphere did take months to appear. What improved so quickly were the last symptoms of my schizophrenia!
It was astounding but the last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she and certain other people looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that the voices were only false perceptions inside my head.
Since we hadn't started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don't have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her, it has worked for no one else and she does not recommend it for any of her patients. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who's to say what it would do in others with schizophrenia...
In 2009, a couple of years after I wrote most of the above, I would like to add the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day. That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could...My apartment seems to "fall apart" and it is so hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can't get back before I get exhausted).
Exhaustion is my biggest fear...that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare...And the outcome has sometimes been negative to the max. I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I'm always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital...
Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn't know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, "Oh. My. God." Then she rcovered a bit, "You look wonderful, Pammy, normal." She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up like I actually cared how I looked, and she couldn't believe it. She said my walk was almost normal, that I was less awkward in my body and so forth. She felt like she had her twin back.