February 07, 2006

How I Recovered

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 the esteemed 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 SZ. So here, forthwith, is a fuller story of how I recovered.

I said in my keynote speech, if you've read it, 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 stabilised 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, meant to regulate sleep, help one attain slow wave sleep, and thereby enable one to be more awake during the day. If one were awake during the day, the spells of waking dreaming would happen less often, one would be more alert on fewer stimulants, and sleep attacks would cease...among other things.

Xyrem is not a drug without a difficult past. It has faced bitter controversy, even being discussed in congress, over whether it had therapeutic uses. Luckily, the testimony of the persons with marcolepsy was convincing enough to save the drug from being banned outright. So it is now available from a central pharmacy as an orphan drug, schedule III or IV.

It is however a difficult drug to take, and I admit that not 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 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!

BUT the effects can be felt within two weeks if you're lucky, though it takes months for some, and for me it was the miraclous 12 days. My improvements had _nothing_ whatsoever to do with narcolepsy though, that's the strangest thing. Those did take months to appear. What improved were the last symptoms of my SZ!

It was astounding but the last little but still important things 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 night nurses (visiting) asked me if had been hearing any voices that day, I could honestly answer, None! I felt no paranoia, had no trouble distinguishing reailty from non-reality, and for the first time began to understand why my delusions _were_ delusions and that my voices were only inside my head and false perceptions.

Since we hadn't started or stopped or changed any other drug in a long time, it seemed certain that the 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, who wrote WELCOME SILENCE but since then has worked for no one. So I may be the ONLY one that Xyrem helps. Buta nagging part of me says isn't psychosis often described as a waking nightmare? If Xyrem helped them go away, literally, for me, (it is part of narcolepsy), who's to say what it would do in SZ...

Posted by pamwagg at February 7, 2006 11:24 AM


Dearest Pam,
If anyone deserves to be the receipient of a "miracle cure",it is you, the strongest, most remarkable woman I have had the privilege to know. I join with you in hoping that others too will benefit from this unpalatable,yet amazing medication. When we finally meet, face to face, you will truly see ME and know that I exist. Just the thought is enough to keep me going. Your blog has helped me as much as it may help others who might benefit from your selfless sharing of your experiences.
With endless admiration,Twinnie 3

Posted by: Paula Kirkpatrick at February 9, 2006 12:03 AM

That is a really spectacular story. I was wondering how you were managing to do the whole book tour thing, which I, even with a less severe case of schizoaffective, could never do. I wonder though, is your improvement due to the new drug, or is it the lessening of psychosis that usually comes around age 50? Have your negative symptoms improved as well? Do you feel completly "normal"? Even though this drug may only work for you, your story reminds me to be hopeful, that things might not always be like this, that someday they might find a cure...

Posted by: Samantha at February 7, 2006 06:29 PM

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