Narcolepsy Forum Posting

Posted by Greg in Oregon on December 04, 2000 at 23:06:21:

In Reply to: Diagnosis pending--help me out here... posted by Alex_C on December 01, 2000 at 20:52:18:

Let's start with the exercise. During college I used to ride my bike 65 miles (6 days a week), run 6 miles (3+ days a week) and swim 2 (3+ days a week during the summer). I've fallen asleep on my rode bike, ran with my eyes shut (just opening them every 10-15 paces) and have actually lulled myself into pseudo-sleep swimming. Once off the bike, finishing the run or swim I would, of course, crash. The upside of swimming was that at least I was guaranteed not to lay down sweaty and wake with that really disgusting, "Now I've got to wash the sheets" feeling. Okay, so I'm a Virgo and sleep compromises my fastidious nature.

The bad news is that exercise is almost a thing of the past, I take more Provigil that I would like, I am in a fog as I write this missive and I don't want to sleep because I hate the notion another evening of sleep paralysis, incubus nightmares and night terror. Okay, I'll just lay my head on the desk, wiggle my fingers and occasionally glance up to see if this makes any sense. Sound familiar?

I remember my protracted diagnosis -- try 10+ years. Basically, I went to allot of idiot specialists who framed my ailment to their specialty. By the time I actually saw a "real" sleep doctor he got very wide-eyed and inquired, "Why did it take so long to diagnose you?" "Gosh doc', I've been telling doctors for years that I would take naps on the stairwell between classes, sleep in my car before and after class (the desk during class), and had a strange weakness that would strike, sometimes bringing me to the ground. You tell me."

He sent me to another sleep doc' who asked the same question with a more, "It's amazing you're alive" tone after explaining how I got through two graduate degrees by taking naps to and from class. By the way, I was the sole driver. Like running, I would micro-sleep my way down the Interstate for the 40 minutes each way trip to the campus. Of course, I would be awakened by the dummy bumps at least two or three times an evening.

I too face the fear of what life would look like without Provigil. Between my two doctors, pharmacy and insurance company I've been out of medication more times than you would believe. They won't let you hoard the medication for fear that you might be pushing it to budding narcoleptics on the playground, so instead of having a few day reserve I run short and out. How? Wait until you ingest 3 pills with a quadruple espresso without feeling the slightest tinge of elevated energy. If you finish your pills before your prescription limit it takes consensus between the docs, pharmacy and insurance company (each with their respective 48 or so hours to respond). A fair comparison is President, Congress and Judiciary agreeing that neither Al nor George deserves the job so they should make Ralph Nader President and Patrick Buchanan his V.P.

Are you ready for the good news? Be thankful that you are on the path to a diagnosis, have Provigil and a boyfriend who cares. Ten years ago when I was 26 and in grad school I would actually credit my chronic exhaustion to alcoholism – but rarely drank. It was just more plausible after the 99th rendition of, “Man you look bad, you need to party less and sleep more.” Yes, it appears that alcohol addiction was more acceptable than the old Chronic Fatigue Syndrome that was bandied about in the mid-80’s.

My last and most important suggestion is that you find a profession that suits your condition. Avoid Air Traffic Controller, skydiving and deep sea salvage diving. If you discover a job that pays you to sleep, post it on these pages and you’ll have a legion of snoring, slobbering, slouching and slumbering employees at your disposal. Instead of 3M, we’ll be 4S.

P.S. Tell your boyfriend that cataplexy is caused my tension, sex relieves tension and is cheaper than Provigil. If your pace is aerobic you might receive double benefit of exercise and stress relief.

Follow Ups:

• Re: Diagnosis pending--help me out here... PHILIP 09:38 12/12/00 (0)
• THANKS. Alex_C 17:46 12/06/00 (0)

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