What if a neurologist in private practice discovers that a new medication approved by the FDA for treatment of depression is highly effective in treating cataplexy? You'd figure that, within 6 months, a year at most, all doctors treating people with narcolepsy should know about this "off-label" use. Unfortunately, the reality is that, over 9 years after this drug was introduced, most doctors, including some sleep specialists, are still not aware of this medication.

The medication is Effexor, approved in 1994 for the treatment of depression. I am very likely the first person to have taken this medication for severe cataplexy, within one month of its release. I had been med-free for 2 years. Frequent, fall-down cataplexy seemed preferable to the nasty side effects of tricyclic antidepressants. I first learned of Effexor in a New York Times business article. It was said to be more similar to the tricyclics than the other SSRIs because it acted on norepinephrine (the brain's version of adrenalin) as well as serotonin, with fewer and milder side effects!

I brought the article along on my next doctor visit. Meanwhile, my doctor was planning to suggest it to me! I began taking it the next day, with noticeable benefits from the start. Within three months, dosage and timing fine-tuned, I was completely free of cataplexy and able to stay awake for hours longer. Effexor is so effective, I have forgotten what it is to live with the fear of cataplexy.

How is it, then, that Effexor hasn't become more widely prescribed for cataplexy? There are several reasons. Under FDA rules, pharmaceutical companies can promote medications only for approved use, even though doctors can prescribe it for off-label uses. The cataplexy market is just too small to warrant a new round of drug trials just to obtain approval specifically for the treatment of cataplexy. So, word of mouth and/or published articles are the only ways other doctors can learn that a new antidepressant works well for cataplexy.

Medications can also become known through a study provided it is large enough to scientifically validate the usefulness of the medication. This was the case with Vivactil. The few published cases on Effexor discuss only one patient's experience, so they do not carry much weight.

Sleep centers with a large patient base have an advantage in that they are more likely to detect patterns among their patients. They observed that cataplexy patients prescribed Effexor for treatment of depression reported a corresponding reduction in cataplexy. It proved to be as helpful to other patients as well. While the doctors at major sleep centers such as Stanford's are very willing to discuss treatments with physicians, most physicians are reluctant to contact them. This is most unfortunate.

Effexor may be taken alone or in combination with Xyrem to relieve break-through cataplexy. Effexor does not improve nighttime sleep as Xyrem does. The benefits of combining Effexor and Xyrem were evident in an overnight PSG I had while taking both medications. Whereas my first sleep study clearly showed narcolepsy, the second study concluded that my sleep was "unremarkable." In other words, there was no sign of narcolepsy in my sleep architecture. That sold me!

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